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1. • CommentAuthorLindaG
   • CommentTimeAug 12th 2009

    # 1Report Post
   Looking for others with Cogan's syndrome (affects eyesight, hearing, balance). I've recently been diagnosed with this auto immune disease (FINALLY!) and will be be starting Remicade infusion next week. I have so many questions and there are so few answers because the disease is so rare.
   
   Any Coganites out there? Thanks.
2. • CommentAuthorCeeKay7
   • CommentTimeAug 13th 2009

    # 2Report Post
   Nope - that's a new one to me. However, I did find a good site for you to check out, including a doctor in Chicago who treats this specific disease: http://www.tchain.com/cv/hain-t.htm ; http://www.tchain.com/otoneurology/disorders/autoimmune/coganpatient.htm
3. • CommentAuthorLindaG
   • CommentTimeAug 13th 2009

    # 3Report Post
   Thank you, CeeKay7. Yes, I did come across the link you posted while researching this disease the last several weeks.
   
   I am grateful to finally have a diagnosis for my months-long symptoms, however devastating, and to finally be at a starting point to move forward again with my life, even though it's going down a very different path than I imagined.
   
   The most frustrating aspect of this whole experience was not being taken seriously that there was something going on beyond what might be typical reasons for my symptoms. Despite what I thought was a good, personal relationship with my family physician, even he made me feel at one point that he was just humoring me with a referral to an ENT specialist, and that really, perhaps psychological therapy was more in order. Fortunately, instead of going home like a good little girl and be quiet, it made me angry--I realized I needed to be my own advocate if I was going to figure out what was wrong with me.
   
   I now feel I have a good "team" assembled with a doctor in charge who seems to be well-respected in this area and knows what he's doing. I am apprehensive about the aggressive infusion treatment of Remicade that will begin next week, but I know that the alternative, total blindness and deafness, would be worse than death.
   
   The isolation is the hardest. The ataxia limits my independence outside of my home and prevents me from driving, going to work, etc. I know it's a process, and I need to be patient, but when you're not really "sick" (pain, etc.), it's hard not to be able to do what you want.
   
   I'm just looking for conversation with people who are ahead of me on this journey so I have a sense of what to expect. Thanks.
4. • CommentAuthorEdinNJ
   • CommentTimeAug 20th 2009

    # 4Report Post
   You're certainly not alone, Linda.
   To find other Coganites, I suggest you contact Anthony Yuppa here in New Jersey.
   He started the "Cogan's Contact Network" twenty years ago. For his story and contact info, go to:
   www.coganssyndrome.info
   
   His website there is rather bare (he does have a link to AARDA though). But I hope he is still working as a volunteer to network people together behind the scenes as he was doing. Please let me know if he is helpful to your getting some of your questions answered by fellow Coganites.
   
   Take good gentle care,
   
   - Ed, Self-Help Group Clearinghouse, NJ
5. • CommentAuthorLindaG
   • CommentTimeAug 20th 2009

    # 5Report Post
   Thanks, Ed. You are the only person I've been able to find who has any knowledge or information on Cogan's! I did see the Cogan's Contact Network site but because it went in circles, I assumed it was no longer active. I will try contacting Anthony Yuppa as you suggested.
   
   Linda
6. • CommentAuthorLindaG
   • CommentTimeAug 26th 2009

    # 6Report Post
   Ed.
   
   I tried contacting Anthony Yuppa at uscogans@juno.com. No response. Will try using the snail mail address that is listed.
   
   I continue to search the web for others like me but indeed, there are few, if any, who are out there. Very frustrating and lonely to say the least.
   
   Linda
7. • CommentAuthorLindaG
   • CommentTimeAug 28th 2009

    # 7Report Post
   Ed,
   
   PLEASE NOTE:
   
   I received a wealth of information from Anthony Yuppa today. PLEASE reinstate his credentials and good name within AARDA as a resource for Cogan's syndrome. His group truly is the only support group out there for Cogan's and I wouldn't want it to be even more obscure to find than it already is.
   
   Thank you.
   
   LindaG
8. • CommentAuthorPatientEducator
   • CommentTimeSep 4th 2009

    # 8Report Post
   <blockquote><cite>Posted By: LindaG</cite>Ed,
   
   PLEASE NOTE:
   
   I received a wealth of information from Anthony Yuppa today. PLEASE reinstate his credentials and good name within AARDA as a resource for Cogan's syndrome. His group truly is the only support group out there for Cogan's and I wouldn't want it to be even more obscure to find than it already is.
   
   Thank you.
   
   LindaG</blockquote>
   
   Hi Linda,
   I'm not sure what you mean by asking that we reinstate his credentials and good name???
   Pat
9. • CommentAuthorHelen
   • CommentTimeSep 6th 2009 edited

    # 9Report Post
   Deleted Post
10. • CommentAuthorLindaG
    • CommentTimeSep 6th 2009

     # 10Report Post
    Helen,
    
    Thanks for reaching out on this forum. I especially appreciate your honesty about foregoing the meds, letting the disease run its course, and dealing with the end result. I've seriously considered that option too, particularly with my hearing. It's my eyesight that keeps me going along with the drug therapy they've been prescribing so far--I just can't wrap my head around losing both senses right now. But I can see myself at some point saying, "Enough!" Quality of life, even if deaf, is much more important to me than being chronically ill all the time from these meds. I don't want to live and feel like this.
    
    Thankfully, my diagnosis was made early. I'm 53 years old and began having symptoms after an upper respiratory infection in March of this year. I had to be an absolute bulldog about getting someone to take me seriously, but a lucky chain of events led me to the correct diagnosis and treatment before total deafness set in. The high dose of prednisone they put me on did restore a lot of what was lost, but I'm realistic to know this is just temporary. I've had two rounds of Remicade infusion, usually used for Crohn's and RA to replace the pred and try to put this in remission--I'm still in the early stages of treatment to know whether or not it will take. If it doesn't, I think I will be in your position--do I move on to another drug or just let it go? I'm doing a lot of soul-searching on that question, too.
    
    The dizziness is the most debilitating for me. Thankfully, I have no nausea and have been able to adapt around my house and do things. I went back to work part-time in order to keep my medical benefits and position but it's exhausting to get through the day--I have to plan every physical movement and tend to just sit in my cubicle and not draw attention to myself. Pretty damn lonely, to be sure.
    
    If you haven't already, please contact Anthony Yuppa at uscogans@juno.com. He runs a members-only Cogan's Network (there's also a website although it's a bit sparse) and I've found him to be a good (and the only) resource for those of us with the disease. It may take up to a week for him to get back to you, but he will.
    
    Please keep in touch. I'd like to help if I can.--Linda
11. • CommentAuthorHelen
    • CommentTimeSep 6th 2009 edited

     # 11Report Post
    Deleted Post
12. • CommentAuthorLindaG
    • CommentTimeSep 7th 2009

     # 12Report Post
    Helen,
    
    I understand how frustrating it can be to be dependent on people. Although my husband has been very supportive, I am not comfortable relying on him for so much, such as having to be driven everywhere I want to go. I really miss my independence. I've become more confident doing things around my home than out in public, but I find myself more often than not sitting on the couch; reading, journal writing, and surfing the web. It's the only time, besides sleeping, when the world stops spinning.
    
    Yet, I do know how lucky I am to have been diagnosed as quickly as I was although you're right, the odds are still not in my favor with regard to eventual deafness. I constantly feel the need to "put my life in order," as if any minute, my time will be up and the world will suddenly go silent. I do not want it to go black, too.
    
    We both have tough decisions to make and my heart aches for you. You are too young to have to deal with something like this. But it sounds as if you have a lot of support, as I do. Here's hoping we both continue to have good luck, good doctors, and more good days than bad. Keep in touch if you wish. --Linda
13. • CommentAuthorkjo
    • CommentTimeOct 9th 2009

     # 13Report Post
    Hi Linda, I too have CS and can attest to the fact that it's very difficult to diagnose and even harder to find info that isn't the same copy-paste version..I belong to Tony's group but they seem to be having a difficult time getting it up and running..I correspond with another CS patient and we have often discussed the lack of an active forum..maybe we just found it! I was diagnosed in 2006 after CT-scan,MRI, lumbar puncture and much, much chasing after Dr's. [I finally have it down to about 5] My favorite, Dr. Bates a Neuro-Optomologist just left private practice and has joined a University Hospital group that my insurance provider doesn't recognize. I have been having a holy fit!!! He was the one that finally hit the CS nail on the head. I had previously been diagnosed with Intracranial Hypertension...My symptoms seem to vary with the barometric pressure or the phases of the moon, I haven't figured it out yet...no rhyme or reason for flare ups. Currently on Prednisone and Methatrexate along with Diamox for the IH pressure...Wear dual Phonak "Eleva" BTE aids and after much, much aggravation, have finally learned to tolerate them {Not the specific aid, just any aid].
    I wear prism glasses for the double vision that occurred. When I was first hit with the symptoms I was a mess!! Felt like a squirrel with it's head stuff in a bucket. Just felt out of control with the vision, hearing and dizziness that hit me. Felt so helpless, dependent, angry and out of control. Slowly as each symptom was addressed and I became accustomed to the "new hardware", things began to fall into place...not the old normal, but a new normal. Hopefully you'll discover your new normal soon.. Let's you, Helen and I keep in touch...Kathi Jo
    `
14. • CommentAuthorLindaG
    • CommentTimeOct 9th 2009

     # 14Report Post
    Hi Kathi Jo!
    
    Thanks for writing and introducing yourself. Slowly but surely, I'm finding people with CS. Yeah! I have been writing to a woman named Kelli in Hawaii for the last several weeks, and I will let her know to check back here and talk with you.
    
    The short version of my hx: I was diagnosed in August of this year after suffering for months with individual symptoms that no one could explain. The best diagnosis I could get when the dizziness kicked in was labyrinthitis. I was going to vestibular therapy three times a week while my hearing began a rapid descent. I was also being treated separately for iritis. It was the physical therapist who felt something wasn't quite right, got on the phone and talked with my ENT; next thing I knew, I was seeing an ophthalmologist specialist and Cogan's was diagnosed. Thus began my course of 70 mg. prednisone, eye drops, Remicade treatments, methotrexate, etc. I feel like I've been to hell and back, but the early prednisone treatment was able to restore most of my hearing and vision.
    
    I just went to the opth specialist yesterday--I've been off the prednisone since Tuesday and things are holding steady. My vision is 20/25 with my glasses; my hearing is almost 100% pre-Cogan's--there are still some tones I have trouble with, and I have to listen hard to certain people's voices, but I don't need any supplemental hearing devices right now. I still have the disequilibrium--the most maddening symptom of all--it's something I'm still adjusting to but I'm getting there. I'm on Remicade infusion every four weeks and methotrexate 7.5 mg. once a week. The doc is thrilled with my progress--after reading so much about this disease, I am too. I know this is only a remission and that everything could change tomorrow, but for the moment, things are good. I am fortunate to have all my doctors (opth and ENT specialist, and rheumy doc), as well as my treatments, all at the same hospital. They all have access to the same medical file--the opth specialist coordinates all the care since he's the only one who can "see" the disease in my eyes if it flares. He's also seen Cogan's before which is a side benefit.
    
    Yes, the "new" normal. I can certainly relate. I'm 53, just graduated from college in May after seven long years, and I had hoped to start my Master's program this fall. Life was going so well and I had plans to do so many things. Now, I can't drive, I'm dependent on people which drives me insane, and I can barely get through three days a week at work without falling asleep--I'm so exhausted from the effort of trying to concentrate on not crashing into walls!
    
    But, on the bright side, I'm finally done with the curse called Prednisone, and I'm enjoying being "me" again for however long I can. I'm going to attempt to drive a short distance this weekend (with someone else in the car, of course) as the ataxia seems to be better.
    
    And yes, Tony's group seems a bit disorganized but Tony did communicate with me by e-mail for a short time during my worst time, which was helpful. I'm still waiting for his "list" of Coganites to contact--we'll see.
    
    Perhaps the creation of a blog is in order. I had thought about doing it when I was awake 24/7 because of the prednisone. I'll have to give it some more thought.
    
    Thanks again for writing. Talk with you soon.--Linda
15. • CommentAuthorRandajean
    • CommentTimeOct 9th 2009

     # 15Report Post
    Hi Linda - Helen,
    First, thanks to Kjo for tuning me in to this site. We've been talking for awhile now. I have to say, if it hadn't been for Tony's web site, I never would have know there were other people with CS. In fact, I pretty much diagnosed myself from the web information. I'm 63 and I got CS when I was 19, back in 1965. Back then, nobody knew what it was - and initially I was diagnosed with Labrynthitis and conjuctivitis. The vertigo was attributed to the Labrynthitis and I was told my hearing would come back after it ran it's course. By the time they put me on prednisone, I was almost totally deaf and never regained my hearing. So, I've been living with this for 45 years now and I thought I'd add some things here to maybe help you all feel a little better.
    My eyes resolved after about 5 years - no more flare ups and no vision loss. Just had to keep using the cortisone eye drops when the redness and pain came and it helped enormously. The eye pain was terrible, but it goes away in time. The bad dizziness resolved after about a year, but to this day, I can't walk a straight line - it seems like when I walk and look at objects, they are moving up and down but as long as I keep my head still it's ok. My brain has adjusted and I don't have any nausea or anything like that anymore. Walking at night without help is pretty tough - I fall over the bushes, etc. but have to laugh. I was also totally deaf for 23 years until in 1988 I had a cochlear implant and can now hear well enough to not use lipreading anymore. That is a blessing. Other than that, I've had a pretty normal life. I have to say it was very devasting losing my hearing so young. I tried to just fade into the background at first and disappear. It took a long time to get my confidence back. I married about 4 years after I became deaf and my husband was and continues to be very supportive.
    Over the past few years, I have had some issues with weird symptoms but the Drs. say it's nothing to do with CS. Hopefully that's true. So, there is light at the end of the tunnel. I have never taken any drugs other than the first round of prednisone all those years ago. I don't think they helped me but it appears now that they know more and if caught early can reverse or at least prevent further deterioration in some. That is truly a blessing. Linda, you are very lucky indeed.
    I wonder how many other people have this disease and don't know it. I find Tony's current website dormant. Does anybody want to start a facebook forum or someother forum where people can find us and get information and share? I'm not that technical at this point - does anybody have any ideas? I have to say it's comforting to know that there are others in our shoes and know what it's like to deal with this. The worst part is not knowing what's wrong, but not knowing what caused it is, to me, even worse. I wish we could find a common thread to figure it out. Something in our DNA? Environment? Have any of your Drs. ventured a guess?
    Well - it's great to have found you all and hope we can keep talking. Kjo-hope all is good in your neck of the woods....
    
    Randa
16. • CommentAuthorLindaG
    • CommentTimeOct 9th 2009

     # 16Report Post
    Hi Randa,
    
    I'm glad you joined our fledgling group. I've contacted another Coganite in Hawaii that I've been writing to--much like you and Kathi Jo--and told her to visit here and join in the discussion.
    
    Thank you for taking the time to write about your extensive experience with Cogan's. Everyone's experience seems "different but the same" and does much to help me understand what I'm going through and what could happen in the future. Like you, I was initially diagnosed with labyrinthitis and possible conjunctivitis (and, earlier on, before the concrete symptoms appeared, some doctors suggested psychological counseling might be in order!) I bullied a lot of appointment secretaries in order to get in to see specialists during that last week before receiving a definite diagnosis of Cogan's--it was a combination of a lot of things, mostly luck, that enabled me to get a timely diagnosis.
    
    I've written to Tony to ask if there's some way we can help with his already established website to make it more active and enable more of a dialogue with other CS members. Depending on his response, we can go from there.
    
    I'm so glad I posted here back in August. Let's hope this site attracts more of us.--LindaG
17. • CommentAuthorkellideister
    • CommentTimeOct 10th 2009

     # 17Report Post
    Hi everyone,
    I can't tell you how excited I am to be in contact with other people that have Cogan's!! On Nov. 17, 1998, while driving on the freeway heading home, I was hit with severe vertigo and lots of noise in my ears. For the next week, I was so sick that I in order to get from one room to the next, I had to crawl. I saw a number of ENT's and no one knew what was going on. I went through many tests. One ENT told me that the reason it was happening was because the 'tiny little hairs that are supposed to be attached to my inner ear had come detached." He then instructed me to go home, and severely shake my head in an attempt to get the tiny little hairs to reattach themselves to my inner ear. Needless to say, after trying that, I was even more sick.
    
    I was originally told that I had Menieres, until it started to affect my vision. At that point, after many shots in my eyes to reduce inflammation and I.V. steroids, I was sent to a rheumatologist who diagnosed me with Cogan's. I now have a great team of doctor's, but I need for them to talk amongst themselves to come to an agreement on treatment.
    
    I have been on Methotrexate for years now and up until recently it has helped to prevent any further hearing or vision loss. However, at this time, I am losing my hearing rapidly. I am deaf in my left ear and very hard of hearing in my right ear. I am looking into getting a cochlear implant. These days, I have more days where I cannot hear than days that I can hear.
    
    I can no longer walk up stairs without a rail, cane, or the shoulder of another. I can't bend over anymore because I will fall down. As simple as it is for most people, getting dressed is a challenge for me now. Even going to the movies is a challenge now because I miss alot of what is said and I can't walk up the stairs to the seats, so am forced to sit in the lower sections.
    
    I am now disabled because of the Cogan's and doing my best to accept my physical limitations. For me, the most frustrating part of dealing with all of this is the attitudes and reactions of those in my life when it comes to their having to repeat themselves because I can't hear them. I rarely talk on my cell phone anymore because I just can't hear the other person. When I ask some people to repeat, I routinely get the rolling eyes, heavy sighs, and comments like, "God, Kelli! Are you wearing your hearing aid?" or "Nevermind! Call me when you can hear!" Those kind of comments really hurt and I'm working on letting those people know that.
    
    Thanks for listening to my story. I was elated when I met Linda and we began keeping in touch and am even more excited to now meet others. Cogan's is such a rare disorder that no one really knows a lot about it. Even my rheumatologist told me that the other day.
    
    I look forward to talking with each of you!
18. • CommentAuthorkjo
    • CommentTimeOct 10th 2009

     # 18Report Post
    Hi Kelli, Nice "to meet you" First off, please tell us who the fool ENT was that told you to go home and shake your head so that we can make sure we never go to him or we can refer our worst enemies to him!
    
    I agree that it is a real pain in the buttocks to adjust to the changes that are happening. I've had many sighs and rolled eyes, too. It's just one of those things that people don't understand until they've been in those shoes. My husband has been so wonderful and the family has been so good but still I find myself having to remind them often that Momma can't hear you when you're talking to the floor and if I can't hear what you said across the room, I sure can't hear you when you're in another one! Fortunately I've just purchased as dual set of "TV Ears" and it is helped greatly in my understanding of tv conversation and has ended the wrestling over the remote to see who sets the volume. Hubby needed the volume up and my aids blew me out of the room at times, so we have solved one inconvenience .... 499 more to go ;) We have given up going to movies but wait until the come out on DVD....nicer anyway..can put it on pause and fill up the chips n dip...
    
    My Neuro-Op put me on Diamox for headaches and maybe IH and I no longer have nearly as many "wake-up headaches". My head would be pounding before my eyes even opened. The Menieres symptoms have generally subsided though I still have occasions where I sort of step off base and make a little twirl much to the delight of my grandkids...they say I'm happy dancing. The Dr said that I could most likely get off the Diamox but he said since things are going so well at this point, why fix it?
    
    I think that I'm in a period of remission... occasional exhaustion and little flare up but nothing like before I went on meds. One thing that has been driving me crazy is the increase in body heat. I really get toasty... taking estrogen and don't think it's regular hot flashes, but you sure don't need a space heater when I'm in the room. I am so glad to be connecting with other CS people...hoping to maybe find a few common threads in our experience and help when we can go "Awhawwwwwww! That explains the weird thing that has been happening!"
    
    Originally the medical people that I dealt with looked at me as though I was nuts and a hypochondriac and I think my symptoms too challenging for some of them as the symptoms seemed to change almost daily....heck...I was beginning to think I was nuts too, but as one of the others has said, you have to be your own advocate and just keep at it until you can locate someone who finally "gets it"... ticked a few Dr's off when I went over their heads or questioned them when I knew that I was indeed feeling a certain way regardless of whether or not that fit their diagnosis....It really put a dent in our finances chancing all over and I wore myself out scanning the internet for info only to find the same stuff on every site and when I did get a bit of info I cataloged it and have kept most of the paperwork and treatment info in order to make some since of what was going on....think my biggest fear was MS
    
    I too look forward to talking to all of you....
19. • CommentAuthorkellideister
    • CommentTimeOct 10th 2009

     # 19Report Post
    Hi kjo,
    Thanks so much for responding. It's so wonderful to talk with others that 'get it.' You know? You write with humor in your post and I appreciate that because humor is what gets me through this at times.
    
    You mentioned getting really hot, I just talked with my dr about that this afternoon because I can't figure out why I get so hot and sweaty. Is that part of the Cogan's too? It's interesting. I just learned that joint pain is part of it, so that explains why I have so much joint pain daily. As far as your twirly dances, lol, I can totally relate because I've been known to stagger and during the early morning hours, I get some strange looks from others, like I'm hitting the drinks. It can be quite comical to see the expressions on people's faces. Anyone that knows me, walks on my right side so I can hear them and they stay a distance away because I don't walk in a straight line anymore.
    
    What does the Diamox do? Does that help with all the symptoms?
    
    Thanks again for introducing yourself! :)
20. • CommentAuthorLindaG
    • CommentTimeOct 10th 2009

     # 20Report Post
    Ladies, your exchanges are SO wonderful to wake up to! Kelli, I'm glad you read my e-mail to check us out over here! A conversation with others going through the same thing--this is exactly what I was searching for all those sleepless August nights, high on prednisone, thinking my life was over.
    
    The most interesting tidbit that has come up among you is the increased body temperature and the sweats. I have them too! They are definitely different than the hot flashes of menopause I experienced--I thought they were from the prednisone (which I've stopped taking as of last Tuesday) but now, after reading your posts, they may be something else. I mentioned it to my ophth this past Thursday and he was more concerned about when they started because of the Remicade treatments. Remicade can exacerbate latent TB if you have it or are exposed to it and one of the symptoms is night sweats. But I assured him, the symptom occurred WAY before the start of the Remicade--he has no idea why I'm having them. Hmmmmm...are we on to something here?
    
    I have a mantel clock that chimes on the hour--14 different sounds. I use(d) that as a gauge for my hearing. At the beginning of my disease, my hearing got so bad that I could only hear two of the chimes. That was the worst night of my life. I sat and wrote a piece called "Silence" that starts, "I wonder what the last sound will be? Will I know it as the last sound? And the last voice--whose will it be? Will I get to choose the memory or will Fate choose it for me?" Despite the initial success with prednisone in regaining most of the hearing I lost, I know I will be facing the issue again. So yes, I do know what all of you are dealing with and hope I will handle it when it happens again with as much grace and humor as all of you.
    
    Oh, the twirly dance! I love that! I crash into doorframes as my special trick. I have the arm bruises to prove it. I can't seem to center myself properly through the opening...
    
    I'm off to a morning appointment but will return. Kjo and Randa, if you don't mind sharing, where do you live? I'm from Connecticut.
    
    LindaG
21. • CommentAuthorRandajean
    • CommentTimeOct 10th 2009

     # 21Report Post
    Hi everybody,
    This is so great - I've got tears in my eyes just having people to relate too. I'm from Florida, but originally from Long Island. Talk about last voices and music - my hearing went totally out the day of the 1965 blackout. I was working in New York City and fell off the chair at work. Like all of you, the vertigo was so bad I couldn't walk or get out of bed without help for several months. The last voice I heard was my Mom's trying to scream in my ear to tell me what was happening during the blackout. I thought the world was ending and I was dying. I remember the last song I heard too and I didn't hear another sound until 1988. For those of you who haven't yet had a Cochlear Implant - it's so wonderful to hear again. Although the technology isn't perfect and it takes getting used to, I can hear well enough to understand about 95 of speech on the phone and in quiet settings. Conversation in groups is still tough but at least I know when somebody's talking and to shut up, lol. I get the sweats too - how odd. I never used to sweat alot at all but the past few years I can't tolerate heat and living in Florida that's no joke. I'm way past menopause and it isn't hot flashes. It's worse at night but can't go out during the day for long without dripping sweat. Also, I forgot that before I actually lost my balance and hearing, it all started with the eye symptoms, bad stomach pain on and off and severe leg cramps. My legs hurt so bad standing up that I couldn't stand more than 30 seconds. It went away when I sat down. None of the Drs knew what to make of it. The leg pain I have now is similar but not as bad, but just started over the past 3 years and that's like 40 years later....maybe it's not connected. My family Dr. did document that I had had an upper respiratory infection shortly before the onset of symptoms. That seems to be pretty common with people who have Cogans.
    
    
    I always wondered if I got stopped driving whether the cop would haul me in for drunken driving because I couldn't walk a straight line. I laugh at myself all the time and everybody who knows me laughs too. You guys are right - humor saves the day. It sounds like everybody has found great Drs. and I wish I could say the same. I'm going to have to find one soon because I'm tired of going from Dr. to Dr. Actually, maybe all the joint pain I have had for 4 years is part of Cogan's. They can't find a reason for it. My feet feel numb, my legs and back ache and I have had this weird trembling in my arms, legs and torso on and off for months. Hard to even describe it. They tested me for MS, Mercury poisoning, lymes disease, and a bunch of other weird stuff and found nothing. I did feel like the Drs. thought I was making it all up but who could make up such things? I'm going to take this information back to the Rheumatologist I saw and hopefully he can figure it out. I grew up in various foreign countries because my Dad worked for Texaco and was always overseas somewhere. I had a lot of exposure to DDT, benzene and also immunizations that I had horrible reactions to like yellow fever and typhoid, etc. (we lived in Venezuela, Turkey and Indonesia). I thought maybe something I was exposed to brought this on. But, can't find anyone else that had that kind of exposure. It just seems so weird that seemingly normal folks from all different walks of life could have contracted such a rare disease and no one has an explanation for it. There has to be something that caused it. I wish I had more time to research but I work full time and am usually worn out at the end of the day. I'm going to retire in a few years and then, if still alive (lol) I'll be able to do more.
    
    One more thing - I recently had the flu and bad Upper Resp. Infection. Dr. put me on prednisone because I could hardly breathe. Guess what, almost all my pain went away during that short time I was on it. That should say something. I wish I could stay on it but it's too damaging to everything else. Oh well....
    
    Great meeting all of you. I hope we keep this going. Never seem to get much info from the group on Tony's web site.
    
    Have a great weekend everybody. Is anybody on facebook besides me and Kathijo?
22. • CommentAuthorLindaG
    • CommentTimeOct 10th 2009

     # 22Report Post
    Randa,
    
    I drove solo for the first time in months today and it was liberating. I only went to town to get my hair cut but I felt comfortable. Yeah, my husband's parting words were, "Don't get pulled over for DUI." Ahem, at 9:00 am? Anyway, I did just fine although I'm not yet ready to drive in city traffic or for long periods of time.
    
    I had the flu before I developed Cogan symptoms along with very bad bronchitis--which required an inhaler. A first for me. Interesting...
    
    I did read a book titled "The Autoimmune Epidemic" by Donna Jackson Nakazawa that explores her theory about why diseases like ours are so prevalent now. She writes about documented case studies where clusters of people in certain places have developed devastating illnesses, and connects it to past environmental contamination (also well documented). Of course, the way food has been produced during the last century is also suspect. And, there's the controversy over old mercury tooth fillings (which another AARDA blog member has expressed extremely passionate views in the past, and had them all removed from her mouth). I found Nakazawa's book to be a bit depressing, although informative--it doesn't provide any answers for a cure, but you might want to read it to help you validate and piece together your own exposure to things when you were growing up.
    
    My feeling is, I can't change what happened to me in the past--I can only deal with now. I try to do that while keeping things in balance. I'm not a vegetarian but I had cut down on my meat consumption for quite some time before my Cogan's diagnosis; I buy organic when I can but I'm not a fanatic about it. I opt for meat and dairy with no growth hormones. You know, little things that I have some control over.
    
    Don't discount your joint pain--my doctors tell me that having another system involvement other than the primary illness is common with autoimmune diseases--my rheumy told me to watch for an increase in joint pain other than the normal "getting old" aches I already had. With Cogan's, I guess heart (aortitis) problems are the most common but certainly not the only system that could be affected. And, don't laugh, but the humidity in Florida could be contributing to your discomfort. I read on another blog for Meniere's that a member went to Arizona to visit a friend and her vertigo improved dramatically. As soon as she returned to Florida, she was miserable again. I guess the ear fluid is very sensitive to humidity, barometric pressure, even how much salt is in your diet--okay, I'm starting to get off track here. I guess what I'm saying is, nothing is out of the question if you think it might be affecting you.
    
    Yes, I'm on Facebook! Talk with you soon.--LindaG
23. • CommentAuthorSeattle
    • CommentTimeOct 11th 2009

     # 23Report Post
    Hello Everyone,
    I was diagnosed with Cogans' in March of 2006. I am 62 years old.The first year was the hardest but my family and medical team were with me every step. I spent a year in vestibular rehab. My husband walked endlessly with me helping me to relearn walking without the help of my inner ears. I still do what we call the “happy dance” sometimes- it is sort of like a cha cha step for no reason.
    My eyes deteriorated and I have had to go back to wearing glasses instead of contacts which I find a really annoying inconvenience. I still have trouble in low light situations. I broke my ankle earlier this year in a dark restaurant going down the steps.
    Dr. Wener told me my worst enemies are exhaustion and stress. I find myself thinking ” Is going shopping this morning worthy of my energy or do I want to save it for lunch with my family at JayBerry’s(local restaurant)?” . My life is full of these kinds of choices now. Of course if the choice involves bellydancing I know what the answer will be.
    I was on Prednisone for 2 years then Dr.Wener switched me to Cellcept. I too get really over heated at times. I have a fan that sits on my desk at work and one at home. I use my digital thermometer to check my hearing because for a long time I couldn't hear the beep.
    When I was first diagnosed a doctor put me in touch with Tony Yuppa who put me in touch with gentlemen in Oregon who was in his 10th year of Cogan's. It made a huge impact on me that he was leading a normal life except for medicine and a quarterly medcal check up.
    My life is fairly normal for now. I am still looking for ways to be healhier.
    Kathi Jo thanks for sending this link out to me.
    
    It is a big world and only a few Cogan's patients. It is nice to talk to others and compare notes.
    
    Peggy in Seattle
24. • CommentAuthorkellideister
    • CommentTimeOct 11th 2009

     # 24Report Post
    Randajean,
    I was interested when you mentioned leg pain because I'm having that also and it can be quite painful. Several doctors told me that the stress I was under while in an abusive marriage was most likely what messed up my immune system. I'm not sure how true that is, but prior to CS I was healthy with my only health problem being psoriasis.
    
    Linda,
    Congratulations on driving solo today!!! Yay! I have been told by friends and family that I should get a note from my Dr. stating I have Cogan's and my balance issues are not due to drinking. I probably should get that done soon, since I don't want to be pulled over for a DUI either. lol
    
    I found it interesting about the humidity affecting the inner ear and the hearing. We are having a lot of humidity here in Hawaii right now and my hearing is going crazy this past two weeks. I wonder if that's why it's happening.
    
    Peggy,
    I have also found that my depth perception is off in the dark. I rarely go walking anywhere at night time because of that reason. I can't judge how big of a drop off it is at the end of the sidewalk. Sorry to hear that you broke your ankle.
    
    How is the Cellcept working for you? My Dr. is thinking of putting me on that instead of the Methotrexate.
    
    Everyone,
    It's so awesome to have met each of y ou and to have the support of others that 'get it' when it comes to CS. I have felt so 'alone' for so many years. So, I'm totally excited at having found this forum and meeting each of you.
    
    It's so interesting how everyone on the forum has problems with being over heated and sweating. I can be not doing any exercise at all and be sweating like I just ran a mile. It's really wierd!
    
    Last night brought a challenge because someone side swiped our car and fled the scene. So, when the officer showed up to file the report, my son started talking to him. The officer looked at me with a questioned expression and I had to explain that while I could talk and tell him what happened, because I could not hear him, he would need to talk with my son about all that happened. My son is 18 so it wasn't a problem with the officer. But it truly underscored the fact that my hearing is worsening. That's a major struggle for me.
    
    Does anyone else have difficulties at night time, besides Peggy? I know I certainly do.
    
    Thanks everyone for sharing your stories. It really does help.
25. • CommentAuthorSeattle
    • CommentTimeOct 11th 2009

     # 25Report Post
    Hi All,
    
    Kelli,
    Cellcept (now in generic form) is working wonderfully for me. I have been on it for about 2 years. I started with 6 pills a day each 2500mg. I am now down to one pill a day. Dr. Wener switched me because the methotrexate was not working very well. He is a big believer in a slow tamper of medicines so there is no back sliding. It took a 2 years to tamper off the Prednisone and 2 years of tampering down the Cellcept. For a year I was taking both.
    I am happy with the results. I haven't had any bad side effects from the Cellcept. It does have some of the same side effects as Prednisone. I had a terrible case of the hungries with both medicines. I finally joined Weight Watchers to get that under control.
    
    Everyone,
    I did not drive for a year and still don't drive at night unless it is a route I travel all the time.
    
    Peggy
26. • CommentAuthorLindaG
    • CommentTimeOct 11th 2009

     # 26Report Post
    Peggy, I'm glad you've joined our group! I am thrilled at the response here the last few days. Although I seem to be past the initial crisis that led me to this site, and my original S.O.S. post, I am able to appreciate everyone's experience more fully now that I've been down the same road a little bit. Knowledge is power and what all of you ladies have shared will help me as I continue on this journey.
    
    Thank you, thank you, thank you. It's so nice to have company...
    
    LindaG
27. • CommentAuthorkellideister
    • CommentTimeOct 11th 2009

     # 27Report Post
    Peggy,
    Thanks for the info on the Cellcept. My doctor is thinking of putting me on Imuran. As for night time driving, I'm the same way. I only drive on routes I am used to and take all the time. I will drive to Ward Center to pick up my son from work, but will not venture into Waikiki because I'm not used to driving that route at night time. It's interesting how it affects night time vision..I'm wondering why that is.
28. • CommentAuthorkjo
    • CommentTimeOct 12th 2009

     # 28Report Post
    Hi all,
    I was gone for most of the day and when we returned this evening I nearly ran to the computer to see if there were new postings..such a long time with little connection that I'm like a starving person and gobbling every thing you write....Yippee....
    Surprises to me....1. more one of us being diagnosed later in life, I was 61....most of what you read or even according to Tony's "protocol" it hits young people...for me that was a blessing because I don't think I could have handled this when I was younger...took me a few years to toughen up..2. a number of us developed symptoms following some sort of bout of respiratory disease. I had been on antibiotics for 4 months for chronic sinusitis when I mentioned to my GP that my hearing was acting up and he said that wasn't uncommon and would resolve itself when I went off them.....NOT....he was out of time when I called during one of my whining campaigns and I went on my own to an ENT...he sent me to another ENT in Cleveland, in the meantime my eyes were again driving me crazy and my eye specialist noticed swollen optic nerves and sent me that day to a Neuro-OP...after about 2 months of running all over creation and being poked and prodded by anyone with rubber gloves on, the Neuro-OP diagnosed Intracranial Hypertension...He put me on 60mg Pred. daily along with Diamox which is more or less like a cranial diuretic...that seemed to help though not alleviate the symptoms, then one day, he gave me a copy of an extract of a posting by the British Journal of Opthalmology
    
    Sensorineural hearing loss in a patient with HLA-B27 sclero-uveitis
    Audiovestibular disease exists in conjunction with several autoimmune disorders. Ankylosing spondylitis, Cogan disease, rheumatoid arthritis, systemic lupus erythematosus, Sjögren syndrome, Wegener granulomatosis, ulcerative colitis, relapsing polychondritis, Behçet disease and scleroderma are associated with autoimmune inner ear disease. We present a patient with HLA-B27-associated sclerouveitis and sensorineural hearing loss, and postulate an association between atypical Cogan syndrome and HLA-B27 autoimmunity.
    Review of systems revealed a prodrome of fever, chills, myalgia, arthralgia and night sweats. Intraocular inflammation was quiescent. An audiogram demonstrated a left-sided sensorineural deficit.
    
    Just so happens, my blood work was positive for HLA-B27 and he said he's like to revise his diagnosis..He said, I think you have CS...I went bouncing into the ENT and said "Hey, Look here! Dr. Bates says it's CS....at which point the ENT said "Oh yes, the other ENT have been in agreement to that for a couple months now"....I was livid....Don't you think you maybe should have shared that with me and the lead Dr? Such a circus it had become trying to find out why I was sick...I was really, really weary ...
    
    BTW...did you notice the last paragraph of the article pertaining to night sweats? I just did after reading it again...must have forgotten it from the original reading....which brings me to another question.... Any of you have "brain fog"? I find that I need to be much more attentive now...and I don't think it is more of the old lady bologna either...
    
    Also experienced horrendous muscle pain...but....it chased around...my husband and Dr's were beginning to look at me out the side of their neck when that was going on....it was like a rat running around and stopping to gnaw at a different point every day or so...for a day or two the left shoulder, next day the right knee, then the right side of my neck....they thought I'd lost it...think the only thing that kept me out of the looney bin was the fact that hubby would have missed my cooking ;)
    
    Tinnitus!! God's punishment for listening to rock and roll...Momma said it would happen... I have various hums and buzzes that create a symphony in my head...just wish they'd tune the instruments! About sent me over the edge at first but fortunately I learned to tune them out most of the time...Audiologist attributes that to the loss of hearing...said it's always present but hearing sounds masks it...
    
    Well I find that I am really rattling on...so much held inside and no one to tell it to. Think I'll give you all a rest for the evening...later, kjo
29. • CommentAuthorLindaG
    • CommentTimeOct 12th 2009

     # 29Report Post
    Even though I'm done with the prednisone (as of last Tuesday), and the methotrexate and Remicade seem to be holding the hearing and eyesight steady, I still find myself in "sick" mode. I act as if this current remission will end at any moment. I'm hesitant to make any long-term plans--I didn't apply for a recent job opening because I thought, "What if?"--and chose to stay in the job where I'm comfortable. I put off going for my master's degree this fall (for obvious reasons), but even though my hearing has been restored and it seems I can drive again, I've been reluctant to check out classes for the spring semester. Again, I have a doomsday mentality that this recovery is short-term and a downward spiral will occur at any moment. I'm self-conscious of the all the extra weight I gained on the prednisone and seem to find one excuse after another why I can't go somewhere. Then again, I am exhausted after work, and even on weekends, I find myself without much energy to do anything. Perhaps depression is part of my problem--but "talking" with all of you has been helpful since you're further down the road with Cogan's than I am, and you all seem to have moved forward with your life.
    
    The tinnitus has diminished to a dull roar and the symphony of pinging, popping, and "thrumming" has actually stopped now that I'm off the prednisone. Some sounds and voices are still not "right" but music is now in tune and my chime clock, the barometer of my hearing, has remained loud and steady. I am desperately hoping this recovery will be long-term and that the disequilibrium continues to improve. I think that's another reason why I can't seem to get off the couch--it is just so uncomfortable and tiring dealing with the dizziness for long periods of time. It's just easier to sit and be still and not crash into things.
    
    Thanks for listening. I know I have so much to be grateful for, and my "issues" are so minor compared to others. But they do get in my way. Hopefully, writing it all down will help. Talk with all of you soon.
30. • CommentAuthorkellideister
    • CommentTimeOct 13th 2009

     # 30Report Post
    Linda,
    I started getting sick with Cogan's on Nov. 17, 1998. In the Spring of 2001 I went back to college. I went for four years, it took me longer than most people due to my health, hearing issues, and the fact that I was still dealing with abuse from my ex. So, it turned into a four year stint for me. However,I did it and I graduated on May 14, 2004 with my AA in Liberal Arts. I then went on to work as an Assistant Instructor for Deaf young adults with the College's Prep. Program, for two years. My point in sharing all of this with you is that you have to continue to move forward. I can honestly say that there is no guarantee that ten years from now any of us will still be at this same place in our health. It's become more of a reality for me right now because quite honestly most days now I can't hear. I am thankful for those moments that I can hear. I grasp at those moments and cling to them because they are the only times I can have long talks with my kids. None of us know what the future holds for us. However, go forward with your plans. Put in that application for the job opening. Even if you get that job and work there for five years, that's five years of positive work experience and joy. I hope I'm making sense in all of this. I have, unfortunately, reached a point where I can no longer work. I have too many physical limitations and my hearing is just not there anymore. I am attempting to be positive and 'move forward' as well. I am most likely going to write my fourth book and try to get that published along with the other three that are already published. Marketing my books will take a lot of my time as well. It's the one thing I have that I can do to move forward and maintain some sense of 'normalcy.'
    
    I sincerely hope that you never get to the point I now find myself at. It seems like, from all the stories shared from the others, if the Drs. catch the Cogan's early on, one stands a chance of getting better results regarding the hearing and the vision. I think that's awesome! Mine wasn't caught early enough. That's ok...I'm now ok with that. Life still holds jewels in it for me and I strive to gather the jewels!
    
    Kelli
31. • CommentAuthorRandajean
    • CommentTimeOct 13th 2009

     # 31Report Post
    Hi everyone,
    
    Linda - thanks for the tip on the book. I got it and have read a lot of it already. Very interesting; however, seems like the whole planet is doomed from what she says. Everything we eat, drink, and wear is contaminated. No wonder there are so many people getting sick.
    
    Kelli, life does hold many jewels in it for you. I hope you will get that implant - it makes a huge difference and the surgery isn't bad at all. I have the Nucleus 22 but I think the Bionicear is good too.
    All of you seem to have been diagnosed fairly recently compared to me and I know that you are apprehensive about what the future holds. When I got CS, there was no diagnosis and no drugs to treat any of the symptoms except for Antivert to help the vertigo and keep me from throwing up, and a short time on prednisone and vitamin therapy as well. Of course, none of this worked. As I think back, it took about 5 years for all of my symptoms to resolve - at least for the most part. I never had another eye flare up after the 5 year mark - was able to walk and drive after a year and pretty much resumed a normal life other than being deaf and off balance. So, I hope that all of you keep the hope that things are going to get better and they will. There is a woman down here in Florida named Barbara C. who had CS around the same time as I did. She didn't get diagnosed until 1992. She is in her 70's now and is doing very well. She is on Tony's site and talking with her encouraged me. I had found her story online and it mirrored my own and that was the first time I had ever heard of anyone else having the same experience as me. She's done remarkably well. I guess the point I'm trying to make is that over the long term, everything will be ok or at least until you reach the 40 year mark and then, I don't know. It's possible that all my problems right now are from other causes. I wonder if the drugs you guys are taking could have anything to do with making you feel worse? Damned if you do and damned if you don't.
    
    I tried to get back into college after this happened but I couldn't find one that would accept a deaf student. I waited until I was 36 and found a college in Florida that had a program for deaf students. It was great, and I got my AS in Accounting. After the implant, I could hear well enough to understand the teachers so I enrolled in a 4 year program and graduated at the ripe old age of 46 with a BA in Management. I went to work at an Investment Banking firm as an Internal Auditor, a job that required a lot of communication. I don't think this would have been possible for me without the implant. I did work for years in accounting without being able to hear anything. Talk about humor - my husband and I had moved to Virginia shortly after getting married and I needed a job. I went to so many places, agencies, etc and nobody would hire me..So, I called the local Newspaper and they interviewed me and put a picture of me in the paper with a caption reading "young, able, deaf." I was mortified. It so happened that my husband's college professor saw the article and he gave it to the HR Director at Old Dominion Univ. in Norfolk, where we lived. They called me in for an interview and hired me the same day. I worked there for 12 years before we moved to Florida. Times have changed alot I think. My last job, I didn't even tell them I was hearing impaired until after I started working and told them I needed a phone with volume control.....Lol.
    
    I have to say that sometimes, I turn off the implant and relish the silence. I don't even know how people can stand to hear 24/7, the noise is so bad sometimes. I can sleep well all night and if I need to concentrate, don't have to have distractions if I don't want to. So, there are some benefits to being deaf yet being able to hear when you want to - if anybody can picture that :)
    
    Tinnitus - a life long thing for me. The implant seems to reduce the severity of it though and I don't notice it as much as I used to. It did drive me crazy for years though. Gosh, Kelli, we all ought to get together and write a book. What kind of books have your written? I learned to appreciate reading so much after losing my hearing and not being able to hear TV, radio, etc. No captions were available back then. I was so happy when captions became available and I could watch a TV program and understand the conversation. I don't think anyone can imagine the isolation we feel being deaf and especially when it happens after having had normal hearing.
    
    I'm going to have to get my printer fixed to keep up with everyone and better respond. Sorry for rambling....It's good to get it out though :) does anybody think we good do a group thing on facebook or would we be too exposed? We might find people all over the world with CS. What do you think?
    
    
    Randajean
32. • CommentAuthorjcgjbg
    • CommentTimeOct 13th 2009

     # 32Report Post
    Hello to all of you. I was diagnosed with CS in 1978 when I was 22. It took months to get the correct diagnosis. My parents found David Cogan@ the HIN ...the disease is named for him. He had a young colleague, Dr. Barton Haines who has followed me from the NIH and then from Duke University where he moved. Dr. Rex McCallum is my main resource now, he was a fellow for Dr. Haines. Anyhow, these men have been life savers.
    
    My disease has had a long course. When I was initially "cured" with high doses of prednisone, my hearing returned to normal and some years later, flare ups began. A horrible flareup started in 1986 when I was studying for my MBA and thankfully classmates helped and shared notes because I could not hear the instructors well. With that flare, my right ear lost significant hearing. A year later, my husband was ill and subsequently died. During that time, I lost the rest of the hearing in my right ear.
    
    Years later, when high doses of pred. did not bring up my hearing in the left ear, I added what was then experimental FK506, now tacrimulus (sp?) I had a long course with both of these drugs, and 7 years later my left ear returned to its "normal" hearing. You can not be sure you will go totally deaf. I have been unable to get of the pred and deal with many flares and I adjust the pred to quell the hearing loss and really loud tinnitus and sense of fullness in the ear. I do not like being on Pred. but it is better than losing my hearing.
    
    Dizziness was initially horrible and I had to lay in front of the commode. Any movement caused terrible vomiting. All this was post upper respir. infection as is typical. Very soon I had dramatic hearing loss and 3 weeks later developed the very painful interstitial keratitis. I too can not walk a straight line. I need to hold on to a rail to walk down steps. I recently moved from Pittsburgh to Orlando and the environmental differences caused many flare ups I believe.
    
    I have had weird allergies to barometic pressure changes when I fly. I would develop hives, runny nose, and a hearing drop. Now I pretreat with 20mg pred and 2 benadryl.
    
    Again, glad to have found you all and if I can help anyone with my experiences, I would be delighted.
    
    joan
33. • CommentAuthorkjo
    • CommentTimeOct 13th 2009

     # 33Report Post
    Good morning Miss Randa! Hi all,
    
    Smiled when I read your entry about turning off the implant....funny isn't it...all the bitching that I've done over my diminished hearing and yet I too find myself yanking out the hearing aids when I want some down time...I find I need periods of quiet...
    
    I haven't reached the point of silence yet, but when that happens I most definitely plan on implants....met a few people with them at HLAA meetings and they were all delighted with the results...
    
    TV.....I watch it some...fortunately I never was a big watcher, so when the hearing went on the blitz and I found listening to be such an aggravation, it wasn't a great adjustment for me....the TV ears have really helped for when hubby wants me to sit with him and watch NCIS, I can better follow the conversations...closed captioning??? found it irritating....they'd be saying "I think I'll go to the store" while you were watching them put the groceries in the cabinets...
    
    I can't image how difficult it must be those of you who are out in the world working ...Did a stint as a barber but I've pretty much stayed at home over the years raising kids and now grandkids [2 teenagers living with us!!! talk about needing periods of silence!!] I'm a master gardener and spend much time outdoors...I find that I have to be selective in going to seminars and volunteering in situations where there will be large crowd noises...The deer in the headlights look I get is not at all becoming :) when I've lost connection to what is going on..
    
    Chimes....smiled when I read about the clock with 14 chimes and the digital thermometer...when I first began losing my hearing, I remember coming in from the gardens and saying to my husband how sad it was that the church down the street had quit ringing the hourly and particularly the noon chimes...I had always enjoyed them and thought "What a shame, some of the neighbors must have complained" ...duhhhhhhhh
    
    A group thingy....GOOD idea! As far as exposure, can't we use nicknames -- Quietoldlady, cogansmomma--to protect our anonymity? I'd hope that we would be open enough that others could read and relate..could contact each other via email for personal contact? I'm not sure how to set it all up but I'd really like to see it happen...
    
    Kathi Jo
34. • CommentAuthorkjo
    • CommentTimeOct 13th 2009

     # 34Report Post
    FYI...THERE IS ALREADY A Cogan's Syndrome Facebook site... just checked it out though didn't read the entries.... kjo
35. • CommentAuthorLindaG
    • CommentTimeOct 13th 2009

     # 35Report Post
    kjo,
    
    Really? There's a FB site? I swear I looked several months ago when this all started for me. Can't believe I missed it. Thanks! I'll have to check it out when I get home--can't access it at work.
    
    And, WELCOME JOAN! You've added much to our group discussion.
    
    LindaG
36. • CommentAuthorkjo
    • CommentTimeOct 13th 2009

     # 36Report Post
    Hi Linda, the site is "open' and started Sept 23rd by 28yr old Christina Fusillo of Ontario...
    
    Hi Joan, glad you joined in...the more the merrier....I believe that laughter is the best medicine....I have a small embroidered saying that simply says "Laugh"....it really helps me get through some tough stuff and I don't believe anyone ever went over the side of a bridge laughing...
    
    Kathi Jo
37. • CommentAuthorLindaG
    • CommentTimeOct 13th 2009

     # 37Report Post
    Ahhh, must have just missed it. I was looking for people/sites at the end of August. Anyway, it's great you found it.
    
    Christina will be surprised when/if we all "invade" her site from the U.S. border!
    
    LindaG
38. • CommentAuthorCrissy
    • CommentTimeOct 13th 2009

     # 38Report Post
    Hello Everyone!
    I am Cristina! Apparently famuos now for starting the facebook page! ha ha ha! It blows my mind I was so alone for the last 5 years now I have so many coganites! An American invasion would be wonderful Linda! most people on the facebook page are from Europe. there is one person from BC so too have more people close to home would be nice. We have become a family on facebook and we write to each other everyday! I started the page because I was tired of being alone. I was scared and had no one who truly understood what I was going through. I have a wonderful family great friends and an amazing boyfriend but none of them got what it is like to have Cogan's. So I started the page in hopes to find people to talk to who knew what it was like. Also to maybe find answers to my questions the doctors never seem to have any I get a lot of "Cristina we dont know there are not enough people" So I figured if I found all the Coganites I would have enough people!!!
    
    I was diagnosed last December 2 weeks before Christmas (Merry Christmas to me) but have been dealing with this for the last five years. I am deaf in my left ear and only have a litte bit of hearing in my right. I wear a hearing aide full time. I am now on 5 mg of Prednisone 200mg of Cyclosporine a pill to make my tummy not hurt from the cyclosporine. Vitamin b12 shoots monthly, vitamin D , calcium and a mild blood pressure pill cause I have just started getting severe headaches. In five years I have had 3 eye flare ups but thankfully my vision is still good however it does take my eyes a second or so to get focused.
    I currently dont work and have not in over a year. I cannot seem to hold down a job for more then 6 months before I get sick and lose more hearing or have an eye flare up. Now no one wants to hire a girl that can't hold down a job for more then 6 months! I am very sad at 28 years old this is not how I pictured my life I was a good kid did well in school went to college worked hard! I tell my parents that maybe if I was a rebel and had partied my life away I probably would have never gotten sick. I dont cry about things unless i am in the shower (why waste good water) I try to be funny about the situation but there are days where my emotions get the best of me. I live at home with my 62 year old parents both who are sick my mom has a heart condition and my dad is an ex smoker who now deals with blood clots so we are quit the team.
    I was reading through some of the post on this page and would like to say yes it is sad not to hear but having the option has its advantages when i get into an arguement with someone or someone starts to complain over the silly things for to long and dont want to hear it any more I take out my hearing aide and tell them they can talk to it cause I aint listening anymore! I do find noise bothers me after awhile like I just dont want to hear anymore.
    
    I hope that my facebook page can make a difference. Facebook is free and you can do live chats like MSN so if you need to chat instantly you can!
    I hope you all join my facebook page and I wish you all well!
    all the best
    Cristina
39. • CommentAuthorLindaG
    • CommentTimeOct 14th 2009

     # 39Report Post
    Cristina,
    
    Thanks for stopping by our site, too! I think both forums have something to offer. The more exposure, the better.
    
    If you've read the previous posts, then you know our stories. Some of us have had Cogan's for a while and others (like me) have just recently been diagnosed. I think the biggest benefit for me in hearing from the ladies on this forum who have had it for a while is that the symptoms do settle down to a certain degree and life goes on. I can remember sitting in the doctor's office after being told of the disease and weeping because I thought my life was over; that I was going to go deaf and blind despite all the poison they were going to pump through my system. I was scared, and alone, and had no information available regarding my prognosis other than what the doctor was telling me, and I wasn't all that sure he was telling me the truth. I mean, I had been to so many doctors--it was hard to trust anyone at that point.
    
    Anyway, now that I've read everyone's open and honest stories about Cogan's, I have a more balanced and realistic outlook regarding my future, and I hope you're able to get to a place like that with your life. I can't possibly understand how it must feel to be 28 and have this disease, but I CAN relate to the fear, the loneliness, and the anger--those feelings transcend any age. Come back and visit us here--perhaps we can offer some "motherly" advice from time to tome--and I'm sure we'll be visiting you on Facebook.
    
    LindaG
40. • CommentAuthorRandajean
    • CommentTimeOct 14th 2009

     # 40Report Post
    Good Morning everyone,
    Have 5 minutes before I have to start work - wanted to start the day by connecting once again with all of you great people.
    
    Joan - good to meet you - I live in Florida too, Clearwater. I can't believe your hearing came back normal after 7 years on the medicine, that's unreal. It never even occurred to me that something like that could happen. I think I will contact Dr. McCollum since I don't have a Dr. around here who knows anything about Cogans.
    
    Christina - We do know what you are going through and I too can relate to all the feelings. It took me 40 years to find someone else who knew what it was like. But, take heart - I managed to have a wonderful life despite all this and you will too. I think it's wonderful that you started the facebook site and have people all over the world communicating.
    
    I have to get to work, but wanted to say to everybody - have a great day and will be thinking of you all.
    
    More later
    
    Randa
41. • CommentAuthorCrissy
    • CommentTimeOct 14th 2009

     # 41Report Post
    Hello Everyone,
    thank you all for the Warm welcome!! It is bitter sweet to find others who understand! It is great not to be alone but sad that there are other who suffer from Cogan's. I would not wish this illness upon my worst enemy not that I have one but if I did I would not want them to have it!
    the hard part for me is that I am at an age where all those my age are starting a new chapter in their lives. All my friends have careers and are getting married having babies, enjoying their lives. I feel like I have been at a stand still. Everytime I move forward Cogan's attacks me and I go back to where I started since I lost my first ear I have had 6 jobs and everytime I was finally advancing I would start to lose more hearing!!!
    I am a tough girl and most days Cogan's does not bother me and I really dont think about it!! Except for the loud ringing in both my ears which makes it impossible to totally forget that I am sick! But for the most part I laugh everyday and try to make others laugh! I have hope things will get better and that this is just another speed bump on the road of life so I must slow down and slowly make my way over it!
    Thank you all again
    Your kindness is greatly appreciated.
    
    Also I was thinking of starting a Cogan's Foundation however the first step is to find a name for the foundation so any ideas would be wonderful! I have asked all those on the facebook page to also try and help with coming up with a name!
    
    Hope you all have a wonderful day
    All the best
    Cristina
42. • CommentAuthorkjo
    • CommentTimeOct 14th 2009

     # 42Report Post
    Hi All, it just makes the day seem brighter when I touch base with you....trying to find something positive in this dreary NE Ohio weather....cold, cloudy, damp....just want to crawl under the bed and hibernate...only 5 months til spring!! They built a weapons arsenal 10 miles from here during WW11 because it was the cloudiest part of the country and enemy planes would have a harder time spotting it....wish my parents hadn't spotted it...keep hoping that one of these days I'll hit the lottery and can hit the sunny roads...Not a good place to live if you suffer from SAD... If I liked my kids I have a son who lives in Aruba ;) but he's too much like me!
    
    Just dawned on me too that maybe I don't have CS...seems that the majority of CS suffers I've talked to have higher educations....thought dumb might help me out but seems that I slipped in under the grid...
    
    Gonna runs and heat up the veggie soup and resume my position under the couch.... later, kjo
43. • CommentAuthorjcgjbg
    • CommentTimeOct 14th 2009

     # 43Report Post
    Thank you all for your welcome. I remember when I was alone for years with no one to compare experiences with. It is so much better having a community.
    
    Another thing happened to me that I blame on the immunosuppressant therapy; 3 years ago I got breast cancer. I never expected that at all and just looked forward to normal mamograms It was a long ugly road, on top on having to deal with the cogans....there should be a limit on how many diseases you can get...but I am fine now.
    
    Joan
44. • CommentAuthorRandajean
    • CommentTimeOct 14th 2009

     # 44Report Post
    Joan,
    I got BC too - in 2002 and I never expected it either. I never worried about that at all. Luckily it was non invasive and caught so early that I just had a lumpectomy and radiation. So far so good. It is hard - but I never took the immuno drugs but did do HRT for 7 years. So, maybe nothing to do with the drugs. I remember those alone years too - too many of them and I'm really thankful for all of you.
    
    Kathi - you're too funny. I don't know if higher education makes people smarter - just maybe opens the job market a little. If I hadn't needed to work, I probably wouldn't have gone back to school. The weather here in Florida is still so hot you can't go outside and breathe good. The humidity is horrible. I don't know which is worse, freezing or frying, lol. We're supposed to cool off for a spell in a few days, I hope. Your son lives in Aruba? Beautiful place - love that Carribean water. We should all go on a cruise and maybe we could get good discounts if we had enough people. That would be a great way to meet and have fun.
    
    Crissy - a foundation for Cogans sounds great. I would love to see it happen. One of the problems I think is that it's a disease you can't see on the outside. We all look normal and it's hard for people to understand how bad it is. I'll try to think of names too.
    
    Linda, Kelli, Peggy - hope you are all good.
    
    Hope you all have wonderful evening and I'm going to sign off. My husband comes home shortly and will want his dinner, lol. Ugh - cooking for 40 years and I am tired of thinking up new meals.
    
    Randa
45. • CommentAuthorLindaG
    • CommentTimeOct 15th 2009

     # 45Report Post
    To all:
    
    I echo Randa's comment about CS and higher education--I don't feel any smarter but with some new job responsibilities--I guess my employer thinks I am! For me, it was a lifetime goal to attend college, and I didn't get my degree until this past May at the age of 53. I don't think the piece of paper makes a difference in who I already was, but it did deepen and strengthen my writing skills and opened up some areas of literature I would have never read. Yeah, I'm one of those nerds with a book permanently attached to the end of her arm--at least for seven years while I was going to school, I was able to hang out with people who had the same interests as I did. My desire to go to graduate school (which I had to delay because of Cogan's, but hope to start in January) is for the company of like-minded people--I can never recoup the cost of college by becoming a published writer or within my current job--not enough years left for that. But sometimes, it's not about the money. Cogan's has driven that point home more than ever.
    
    Have a good day everyone.--LindaG
46. • CommentAuthorCrissy
    • CommentTimeOct 15th 2009

     # 46Report Post
    Hello everyone,
    I am not well today! I feel very fustrated today. I am always so tired. i wake up tired. I was always on the go and now barley have the strength to get dressed in the morning. I am 28 yrs. old and feel as if i were 100. My only goal each day is push myself into not taking a nap! Most days I win but some days I can braley keep my head up! I have explained this to my doctors but they have had the guts to say that maybe I am just lazy.
    I will say I know that is not the case! I was a very active person always on the go and now I am home all the time trying to find things to do! For the most part I do stay busy. lets just say my home is very clean and organized!!!!!
    I watch all my friends go to work and build a career and have lives while I stay home! I want to cry today I feel so fustrated! i dont want to be sick anymore I want my life back. it has been 5 yrs of this and have thrown away most of my 20's any longer and I may just go crazy!!!!
    Sorry for the venting but I just needed to get it out!
    All the best
47. • CommentAuthorLindaG
    • CommentTimeOct 15th 2009

     # 47Report Post
    Crissy,
    
    I don't know how I'd make it through life without naps. Give in to them if you can. They won't hurt you and you might find they help. I even have a special "nap" quilt and pillow. Here's a piece by Robert Fulghum that I think might be appropriate for all of us (and you Crissy!) who are dealing with our "new" lives:
    
    We Learned It All In Kindergarten
    by: Robert Fulghum
    
    
    Most of what I really need to know about how to live, and what to do, and how to be, I learned in kindergarten. Wisdom was not at the top of the graduate-school mountain, but there in the sandbox.
    
    These are the things I learned. Save everything. Play fair. Don’t hit people. Put things back where you found them. Clean up your own mess. Don’t take things that aren't yours. Say you're sorry when you hurt somebody. Wash your hands before you eat. Live a balanced life. Learn some and think some, and draw and sing and dance and play and
    work every day some.
    
    Take a nap in the afternoon. When you go out into the world, watch for traffic, hold hands and stick together. Be aware of wonder. Remember the little seed in the plastic cup? The roots go down and the plant goes up, and nobody really knows why, but we are all like that.
    Goldfish and hamsters and white mice — and even the little seed in the plastic cup — they all die. So do we.
    
    And then remember the book about Dick and Jane and the first word you learned, the biggest word of all: LOOK. Everything you need to know is in there somewhere. The golden rule and love and basic sanitation.
    Ecology and politics and sane living.
    
    Think of what a better world it would be if we all had cookies and milk about three o'clock every afternoon and then laid down with our blankets for a nap. Or if we had a basic policy in our nation and other nations always to put things back where we found them and
    cleaned up our own messes.
    
    And it is still true, no matter how old you are, when you go out into the world, it is best to hold hands and stick together.
48. • CommentAuthorRandajean
    • CommentTimeOct 15th 2009

     # 48Report Post
    Crissy et al
    
    Just a quick hello as I'm still at work but wanted to make a suggestion for whatever it's worth - maybe depression is factoring in to the tiredness. Not everything can be attributed to Cogans and it seems to me that depression could easily set in with all that we have to deal with. I went through a bout of it where I couldn't stand to get out of bed because I was so tired all the time. My Dr. insisted it was depression and I wouldn't believe her, but in the end I did take an antidepressant called Lexapro and it really helped me. I'm not the most energetic person but this medicine brought me out of the doldrums and back from the brink. I only took it for 6 months. Just a thought. Also, I agree that naps are great and I never miss an opportunity to take one - it's such a luxury and I sleep better in the afternoon than at night. '
    
    Hope you're feeling better Crissy and Kjo, hope our eyes are better too. Linda, I'm an avid reader as well. I love it and love to write too. I just finished a book called "The Help" by Kathryn Stockett I think. I would highly recommend it to anybody who loves to curl up with a good book and get lost in it. It was outstanding.
    
    Ah - have to get back to work - More later.
49. • CommentAuthorLindaG
    • CommentTimeOct 15th 2009

     # 49Report Post
    Randa,
    
    Yes! I read "The Help" during my sleepless nights in August when I was on prednisone. I think it only took me 2-3 days to read through it. I agree, an excellent book. I love Southern literature (Faulkner, Welty, O'Connor, et al), so I appreciated the setting.
    
    I also agree with the depression piece. Crissy, it wouldn't hurt to talk with your doctor about it.
    
    LindaG
50. • CommentAuthorCrissy
    • CommentTimeOct 15th 2009

     # 50Report Post
    Thank you every one for the comments I will definately speak to my Dr. about it! I believe that Depression is almost a normal part of Cogan's at least at some point!!! Only due to the fact that it all happens so quickly
    All my best to everyone and I hope you all have a wonderful evening!
51. • CommentAuthoraimeez
    • CommentTimeOct 16th 2009

     # 51Report Post
    Hi All! I've been reading your posts for the past few weeks while I waited for my Dr appointment for diagnosis. I was pretty sure I had Cogan's. Here is my story....
    I am 40 y/o married mom of 2. Fletcher is 9 and Samantha Jane is 7. I am originally from MN and we currently live in MI. Ironically I have worked in the eye care industry for 20+ years. I am a certified optician as well as having my advanced certification in contact lenses. I know eyes! I was diagnosed with bilateral Uveitis on July 8 of this year. I had been quite sick with a "virus" for about a week. When the virus was at it's worst I started noticing that my eyes were red and quite painfull. I phoned my optometrist who told me it was just part of my "cold". I went to see my primary doc on the Monday after the 4th. He gave me antibiotics for a sinus infection and Tobradex for my eyes. The drops took away much of the pain in my eyes but my vision was still poor. I phoned my OD but had to leave a message. He never returned my call! On July 8th I fianally called another OD I know who works at a large Ophthalmology group. He saw me that day and things have never been the same since!
    I have been on Pred Forte in varying doses (1x/hour down to 1x/day) since July 8. I have spent weeks using Homatropine several times a day for pain. This of course dialates the pupil. I have had numerous vials of blood tested for all kinds of nasty things that I thankfully don't have. I had a chest x-ray also that was normal. Let's just say that this past summer SUCKED! Summer is my favorite time and I couldn't stand to be outside in the sun. And I turned 40!
    Just when I was feeling optomistic and looking forward to possibly wearing contact lenses again my Uveitis flared. On August 21st I was down to 1 drop/day when I started feeling the pain again. I cannot describe how awful I felt emotionally. Well, things got worse when 2 days later I woke with this terrible "roaring" in my head. I was dizzy and off balance and couldn't hear right. My Ophthalmologist saw me on Monday to confirm the flare up (4+ cells again!) and they were able to phone my ENT and get me in the next day. The ENT wasn't quite sure what was going on either. He did some tests in the exam room and then had some hearing tests done. I was definately missing low tones in each ear. He sent me home with prescriptions for oral Prednisone and a dirutetic. That same day I experienced my first episode of virtigo. OMG!! Just shoot me. Here I am trying to fix lunch for my kids and I was literally bouncing off the kitchen cabinets! I had one other episode of virtigo 2 days later but by then had gotten a prescription for a low dose of Vallium. When I returned to the ENT 1 week later things had calmed down in my ears but I was still off balance (for weeks). He repeated the hearing tests which showed my right ear almost normal but my left ear still not quite right. He diagnosed me with Meniere's told me to continue the diruetic and watch my sodium intake and he would see me in 6 mos. I asked him about Cogan's and he had never heard of it! How hard is it? I searched Uveitis and Tinnitus and my first hit was Cogan's. I knew then that it was up to me. I already had an appointment to see a Uveitis specialist at the U of M in Ann Arbor and figured I would ask her. As it turns out she mentioned Cogan's before I could ask her! She sent me to an ENT in AA and he confirmed Cogan's. I had to call around a bit to find a Rheumetologist in GR but I think I found someone who has some other Cogan's patients. Wow, wouldn't that be something?
    Right now I am fairly asymptomatic. But I hate that feeling of waiting for the other shoe to fall. I'm hoping to get into the Rheumetologist soon. Waiting for the referrals to come through. I am very thankful for my friends and family for their wonderful support. I'm also happy to have found all of you. Glad we have each other!!! I am also on FB and will post this there as well. Wishing you all the best, Aimee
52. • CommentAuthorcoganite 1987
    • CommentTimeOct 16th 2009

     # 52Report Post
    Fellow Coganites:
    I am very pleased to see everyone out here and thanks to Linda G. for starting the thread. I am completely overwhelemed by all the reading/posts so far. I will also say it becomes very confusing to keep up with everyone. I find this very usual these days for me to be confused with information. I do run the cogans contact support group. And this is where I keep all the information on our members safe and sound. I sincerely hope those who have not contacted me, will contact me at uscogans@juno.com. The E-address is very much alive and well !! I have seen coments about the web site I began and do wish it was more appealing. But I must admit, it is a good starting point b/c you guys found aard site and are out here now..on this thread.. posting and talking and sharing.. I like it very much. I have some plans this weekend but will check in sunday when I am home.
    I woul dhope everyone can follow a format such as I have seen where they first post their name, then who is it addressed to.. such like
    JKO: Took your advice I am here now!
    Linda: I took your advice too am here now.
    I think this format will beless confusing for all.. unless you guys have other ideas, I am looking forward to them.. This is definately something I should of thought of a long time ago. Keep up the good work. I believe Linda is the moderator? If so, you go girl. this is your project.
    Tony.
53. • CommentAuthorLindaG
    • CommentTimeOct 16th 2009

     # 53Report Post
    Tony (Coganite 1987): Well, I don't know about being the moderator...I was just desperate to find someone to talk with when I was diagnosed back in August and this site seemed to be the best place to post. I'm so glad you joined all of us! Please keep coming back and help us all stay connected.
    
    Aimeez: Welcome! Your story parallels mine almost exactly--and during the same time frame! My 4th of July was spent wondering if I would ever feel well again, too. It would be several more weeks, and lots of scary moments, before I was diagnosed with Cogan's. You and I are fortunate we got an early diagnosis, as many of the ladies here (and Tony!) will attest. Yes, this summer was a definite bust--I spent it on a prednisone high that I don't wish to ever repeat.
    
    I'm at work so I can't stay...hope everyone is doing okay today.
    
    LindaG
54. • CommentAuthorRandajean
    • CommentTimeOct 16th 2009

     # 54Report Post
    Welcome Aimee. I'm so glad you found us - it's such a blessing to share with others. Things out there are greatly improved since I was diagnosed as can be attested to by LindaG. Thank goodness there is more awareness and you didn't have to wait years to get diagnosed. There is definitely now quite a bit of information on the web that wasn't there even a few years ago except for Tony's info. - which was a godsend to me at the time.
    
    Tony, great to see you visit us. It's been awhile. Hope all is going well for you and from your last messages, life seems to be good. Kjo started a private facebook site in case anyone is uncomfortable with the public one. I have been reading some of the postings on the public one with people all over the world. My heart goes out to everyone. I hope we can all integrate and manage to communicate in an organized way. I, too, am finding it a little hard already to keep up and want to be able to know everybody. I'll bet Kjo can find a way - she seems technically savvy. Anybody else have ideas?
    
    Crissy and Kjo - hope you are feeling better today. Will be thinking about you and everybody is in my prayers.
    
    Kelli - Helen - How are you? Haven't seen you for a couple of days on here and hope all is well.
    
    Joan - Hope you're good too. Do you happen to know any Drs. in Fla. familiar with CS?
    
    Have to get back to work - Thank goodness it's Friday. Woke up at 4:30 with widespread pain and finally made an appt. with Rheumie....Hope he can help. Have a great day everyone.
55. • CommentAuthorLindaG
    • CommentTimeOct 16th 2009

     # 55Report Post
    Randajean: Are you able to you give us the info to find kjo's FB page? Thanks.
56. • CommentAuthorRandajean
    • CommentTimeOct 16th 2009

     # 56Report Post
    Linda,
    Its Cogan's syndrome-coganites on facebook. I am talking to some wonderful people on the open site. Eleni works in Germany, doing her Doctorate in a teaching hospital - working with cochlear implant patients and she herself has the implants. Ines is from Portugal and also working with Deaf children and is working on her Doctorate. She's writing her thesis on Deafness and Cogans. Anyway, I would check out the postings and the discussion group on that site even if you don't want to join it. Some good ideas are needed and hopefully will get off the ground. See what you think. I asked Ines to join us here too. I'm exhausted having worked all day and still trying to talk to these people. But it's worth it.
    
    Everybody, check it out.
    
    Have to get off for now.
    
    Kjo - hope you're ok - haven't seen you today and know you weren't feeling good yesterday. Thoughts and prayers are with you - and all of you as well.
    
    Night.
57. • CommentAuthorLindaG
    • CommentTimeOct 16th 2009

     # 57Report Post
    Randa: Thanks for getting back to me so quickly on Kjo's new site. And, yes, I have been "lurking" on Crissy's site--I agree, some very interesting people. So much has happened in such a short period of time. Like you, I've worked all day and I'm so tired but this is certainly exciting.
58. • CommentAuthorcoganite 1987
    • CommentTimeOct 18th 2009

     # 58Report Post
    I just wrote a rather long comment and am disappointed it encountered errors and was not written. of course there was no real explanation as to why it didn't get printed. I am just turned off now. what I had written was very good. my point being to becareful out here and promote the CCN. I am not going to go further. I suggest those of you with cogans syndrome contact me. I am at uscoans@juno.com. thank u. Tony Yuppa. Founder CCN since 1987
59. • CommentAuthorLindaG
    • CommentTimeOct 18th 2009

     # 59Report Post
    Tony: Trust me, I know the frustration of writing a long post only to have it get lost in cyberspace. I've found that most sites like this "time out" after a while. So, if you get interrupted while you're typing and have to come back to it, or you have a long post, the best thing to do is highlight your post and hit "copy" before you actually post it. That way, if your comments get "lost" you can always paste it into the forum and try again. Another way is to type what you have to say in a Word document and do a copy and paste into the forum. I'm sorry to have missed out on what you had to say...I really think you were just "timed out" before you had a chance to hit "Add your comments." I don't think it was personal.
    
    I'm sure you know how lonely and frightening it can be to feel as if you're the only one with Cogan's. People have a tool now (the internet and Facebook) that gives them instant access to others and they're taking advantage of it. Your warning to be careful is appreciated. The information from CCN was very helpful and I appreciated your e-mail support when I needed it the most. I hope to be able to connect with others when I get the list of members from you. Several people who have posted here are already part of CCN. Thanks, Tony.
    
    LindaG
60. • CommentAuthorSeattle
    • CommentTimeOct 19th 2009

     # 60Report Post
    To All,
    Being very tired was mentioned. I was blaming Cogan's for feeling so tired and achy lately only to have my doctor tell me my TSH was out of wack. Which was causing my Hashimoto's thyroiditis to throw a little fit. My doctor changed my dosage of Levothyroxine a couple of months ago and I am feeling somewhat better. It does seem once you get an auto immune problem others follow. I have also had ITP (no blood platelets) a few times over the years.
    But life goes on and stressing out too much just makes it worse.
    
    I totally agree about napping and getting plenty of sleep. It makes a huge difference. Sometimes I get so tired at work that I go out to my car and have some quiet time and maybe a little snooze. I usually move my car to another parking lot and tell my assistant I am going out for a Diet Dr. Pepper.
    
    Take care of yourselves everyone.
    Peggy
    You have to take care of yourself at work because no one else will.
61. • CommentAuthorCrissy
    • CommentTimeOct 20th 2009

     # 61Report Post
    Hello everyone,
    thought I would stop in and see how everyone is doing! hope you are all well. I am new to this Coganite community and have spent the last 5 years alone dealing with this with no one who understood.
    I started the facebook page for two reasons 1- I needed someone to talk to who would understand my daily struggles and 2- because the only way to be helped is if people know there is a problem so I wanted the world to know I had cogan's and I needed help. My group is open to all there is no test or form you need to fill out I do not pick and choose who is on the group. Yes there are people on the fb page who do not have Cogan's but wanted to learn more about it and wanted to show their suport. I dont keep tabs on people I just wanted a place for everyone somewhere where we can gather and talk about what we feel and how we feel a place for everyone to learn.
    I wish you all well.
62. • CommentAuthorLindaG
    • CommentTimeOct 20th 2009 edited

     # 62Report Post
    Crissy: When I was first diagnosed with Cogan's this past summer, I thought about starting a blog or putting my experience on my personal FB page. Like you, I was desperate to talk with people who knew what was happening to me, and there just didn't seem to be anyone out there.
    
    The internet, and all it has to offer, is a wonderful thing. There seems to be limitless information about everything (except maybe Cogan's!), and cyberspace has many options for people to find where they are comfortable to express themselves. Personally, I find FB to be a great way to keep in touch with family members and friends who live out-of-state, but I don't feel comfortable sharing intimate details of my life on a FB site for the whole world to see. But, that's just me--other people don't have a problem with it at all.
    
    I realize that nothing is foolproof. No matter what sort of safeguards a site advertises, in the end, you take a chance when you're dealing with cyberspace. But I appreciate that I have choices--the choice to pick a place to deal with my disease in a way that is comfortable for me and that causes me the least amount of stress.
    
    So far, I have found the AARDA forum to be one of the comfortable places for me to post. It has introduced me to several people with Cogan's, including you, and I have been able to establish a dialogue with people either here on this site, their site, on my personal FB page--or privately through e-mail. While waiting for other Coganites to find my thread here on the AARDA, I also reached out to other people with different autoimmune diseases because, in the end, no matter what we're suffering from, we all need some peace and support from the negative drama occurring in the outside world.
    
    The CCN, a Cogan's organization started by Tony Yuppa back in 1987, is also a site I chose to be a part of because it offers some of the things I'm looking for to help me deal with my disease. It is a good fit for me even though it might not be a good fit for others. Yes, it is only open to people who have been definitively diagnosed with Cogan's based on the organization's established criteria, and there is a screening process as well as a nominal membership fee. I don't have a problem with that. For those who do, it is obviously not a site for them.
    
    Again, it comes down to personal choice. I think there is enough room for everyone to find their comfort zone in one place, or many. I hope you come back here to visit often, even if it's just to read the posts. Thanks for your good wishes, and if I can help you in any way, let me know.
    
    LindaG
63. • CommentAuthorCrissy
    • CommentTimeOct 22nd 2009

     # 63Report Post
    LindaG
    I agree I think all of the sites are AMAZING! I just put that note in so that there would not be any confusion as to my intentions which from some comments on some sites there seems to be. I also agree it is a choice people make and which site fits best for them which is great!!!!!
    of Course I will visit you are all so sweet and nice and have such good advice which believe me I need!
    But I wish you all the best and hope you are all well.
    Always
    Cristina
64. • CommentAuthorkellideister
    • CommentTimeOct 24th 2009

     # 64Report Post
    Hi everyone,
    Wow!! I was gone for about a week. I was originally getting notifications when there was a new post here, but for some reason I haven't gotten a notification in the past week. So, I decided to come see if there were any new posts and was, honestly, overwhelmed. lol
    
    It's so nice to see others here. This is such an answer to prayer for me. I have felt so alone for the past eleven years. I started getting symptoms of Cogan's on Nov. 17, 1998. It's almost that date again and things are very different this year, since I am meeting so many others that have CS. What a blessing!
    
    I went to FB and tried looking for the Cogan's Syndrome page, but couldn't find it....is there a specific title that I can enter?
    
    I will take some time to re-read all the most recent posts that I have missed and try to chime in on them. Unfortuantely, I am sick once again. I get sick so often because of the methotrexate I'm on to prevent hearing loss. I'm starting to wonder if it's really worth it to be on the methotrexate.
    
    Again, so nice to see so many people here who 'get it' and 'understand' what it's like to live with Cogan's.
    
    Kelli
65. • CommentAuthorLindaG
    • CommentTimeOct 24th 2009

     # 65Report Post
    Hi Kelli,
    
    I think the AARDA only contacts you if someone responds to your immediate post. (Like me responding to you now!) At least I think that's how it works.
    
    Sorry to hear you're sick again. What dose of methotrexate are you on? I've been on 7.5 mg for the last four weeks, along with the monthly Remicade infusion and haven't had a problem. Just curious what I should look out for.
    
    If you type in Cogan's Syndrome-Coganites (exactly like that), it should bring you to Kjo's site.
    
    Talk with you soon.--Linda
66. • CommentAuthorkellideister
    • CommentTimeOct 24th 2009

     # 66Report Post
    Hi Linda,
    I'm on 25 mg of methotrexate once a week. That's the highest I can go on it. I think you're right about being notified here because I did get the notification that you posted. :)
    
    I'll try typing in the FB name just as you have it.
    
    Hope you're doing very good these days!
    Kelli
67. • CommentAuthorkellideister
    • CommentTimeOct 24th 2009

     # 67Report Post
    Linda,
    I did cut and paste what you put down and still nothing comes up....I don't know why I can't pull it up. Is it possible, since you have my facebook name, that you can send me a 'suggestion' for the site and I can access it that way? Thanks!
    Kelli
68. • CommentAuthorRandajean
    • CommentTimeOct 24th 2009

     # 68Report Post
    Hi Kelli,
    Was wondering where you were and glad to see you back. There are two facebook sites - Cogans Syndrome and the one above that Linda referred you to. The Coganite Syndrome site is private and the other one is public. I'd suggest reading the comments on the public site but you don't have to join it if you're uncomfortable with it - there is a discussion page where about 7 or 8 of us have put our symptoms on and also the various meds. people are taking. It's kind of nice to compare notes on that. Anyway, I guess I wrote about this already - you'll see my comments.
    
    Hope everybody is doing ok - have a great weekend.
69. • CommentAuthorkellideister
    • CommentTimeOct 24th 2009

     # 69Report Post
    Randajean,
    Thanks for answering so fast. I did copy and paste how you wrote it and still...nothing comes up. lol I can't figure it out.
    Kelli
70. • CommentAuthorkjo
    • CommentTimeOct 24th 2009

     # 70Report Post
    Hi Kelli, I'm sorry that you're having a problem finding the CS-Coganite site, if you will email a request to mellowone78@yahoo.com I will add you to the group...FB changed some settings and hopefully they'll get the bugs out of the changes... looking forward to seeing you, Kathi Jo
71. • CommentAuthorkellideister
    • CommentTimeOct 24th 2009

     # 71Report Post
    kjo,
    I emailed you a request on fb. Thanks so much!
    Kelli
72. • CommentAuthorkellideister
    • CommentTimeOct 25th 2009

     # 72Report Post
    Hi everyone,
    I have a question. Does anyone understand why Cogan's causes vasculitis(sp?) as well? In my research, it talks about the vascular system being affected with Cogan's. I'm just curious. Thanks! Kelli
73. • CommentAuthorRandajean
    • CommentTimeOct 25th 2009

     # 73Report Post
    Kelli - It's Cogan's Syndrome with an apostrophe - sorry. Hopefully you got on the private site now too.
74. • CommentAuthorkellideister
    • CommentTimeOct 25th 2009

     # 74Report Post
    Randajean,
    I did actually try it that way and did it again just now and it still says there are 'no results' for it. I am on one fb site, but not sure if it's the private one or not. I'm sorry. :) Kelli
75. • CommentAuthorkjo
    • CommentTimeOct 25th 2009

     # 75Report Post
    Hi Kelli, I responded on the CS-Coganites FB but this may help others...you are signed as a member there...I found when I looked, that the site was listed on the second page of listings for Cogans....not necessarily the disease but families and establishments by that name...next time I looked, it was the very first listing...??? go figure..anyway, you did find us and I'm sorry for the confusion... I hate computers!! some of the least complicated things can become monsters... requesting to join can also be done by e-mailing mellowone78@yahoo.com Kathi Jo
76. • CommentAuthorkjo
    • CommentTimeOct 29th 2009

     # 76Report Post
    Okay, the Cogan's Syndrome-Coganites FB site has been up and running for a couple of weeks and already there has been a few changes hopefully for the better..one is the new email address coganites@yahoo.com in the hopes that it will be easier to remember. It is a closed site for CS sufferers. Hope all is well with everyone...I've been fighting an ugly sinus infection and spending my days drinking tea and whining.....kjo
77. • CommentAuthorSabina
    • CommentTimeNov 14th 2009 edited

     # 77Report Post
    Hello everybody,
    
    my name is Sabina, I will be 52 years old in two weeks and I was told three days ago that I most likely have CS.
    I am living in Germany.
    At the moment I don't have the nerves to read all your entries but I hope I will calm down enough to do so as I am really desperate for information and personal human experiences. I work as language editor for medical research and have looked at a couple of medical papers on CS but it's a very depressing business - and lonely!
    I have had several short vertigo experiences, the earliest going back some 20 years. Generally, these episodes came and went. On one occasion 6 years ago I spent 4 days in hospital but felt much better once I got away from the iv cortison and vit b12 drip and bed rest. In the past, vertigo responded well to compensation exercises to start up the non-affected ear and to gentle physical exercise (I am a keen cyclist).
    I also have a tinnitus for several years that has never bothered me much. My father has lived with tinnitus for 30 years now -and leads a full and healthy life, so I never felt too affected.
    In 2000 as part of a routine check up I was diagnosed with autoimmune hepatitis. Luckily, my liver recovered with non-steroid treatment after 8 months. Instead, I have since developed ulcerative colitis (fairly mild so far) and occasional swollen joints which I have been told are all autoimmune-related. Two years ago I started to get flares of cornea ulcers, again autoimmune-related. These typically appear as itchy white spots at the outer rim of one or both corneas and so far have responded well to topical cortison treatment. I have very dry eyes all the time.
    This summer in August I developed a high fever with no other symptoms for 3 days and have not felt 100% fit since then. Early this Sept I had a fall - in fact I fainted which is not something I usually do - and about 10 hours later developed a ringing noise and echo in my left ear. A visit to the ENT doctor revealed nothing, my hearing was fine and I was ordered rest. I have not been back to work since and my condition has deteriorated steadily. Since then I have lost and recovered my balance in the left ear, had fever flares, I now have a constant very deep and loud tinnitus in the left ear, occasionally switching sides and getting worse with head movements, yawning or brushing of my teeth, a ringing noise in my head as if I was about to faint at all times, often I feel as if I am inside a glass jar, nauseau, lost a good bit of weight, night sweats, very heavy shivers and I am often really cold with my teeth shattering.
    I have done the rounds, seen neurologists, cardiologists, had MRI of brain and neck, CT of skull, X-rays, blood test for Lyme's disease and what not, I tried to tolerate (no luck) gentle physiotherapy treatmentof the neck as there is slight indication of some trauma from the fall, but insufficient to explain all my symptoms. I often feel as if a am receiving a slight electric shock through my head and at times, it feels as if my brain tightens (I know it sounds odd). Also, lengthy episodes of hyperacusis lasting several days (really awful!) and last week the hearing in the left ear suddenly decreased. Luckily, my family GP sent me directly to yet another ENT expert who started cortison infusions immediately. I have had two of these so far and felt much better after the first one already. The third one is due on Monday. For the weekend, today is Sat, I was provided with medication to aid circulation in the brain. This ENT expert also mentioned CS based on my eye troubles and my history of other autoimmune manifestations. I am not so good today and my mind is spinning with potential disaster scenarios.
    My family GP has suggested a lengthy stay, 3 weeks at least, at a specialist clinic for tinnitus and hearing disorders which also specialises in psychosomatic medicine simply as a period of rest and also to learn and cope with any anxieties and stress relating to this new situation. However, the ENT expert is concerned that in such a clinic I may not receive the medical attention required for CS.
    I have located a professor for ENT at another university clinic in Germany who has published some case reports on CS and I have contacted him in the hope that he will see me for a second opinion. My family GP has openly admitted that he is at a loss but I know that he will support me, organising insurance details etc.
    I found these last three months now really hard, a complete change from my active life. I try to keep up some of my work from home but can manage only 1-2 hours a day. My wonderful familyis supportive but scared.
    Thank you for giving me this space. I will read all your entries eventually. And I would welcome any advice you may have.
    Sabina
78. • CommentAuthorkellideister
    • CommentTimeNov 14th 2009

     # 78Report Post
    Sabina,
    First of all, welcome to this forum!
    
    You will find many supportive individuals here and be able to get some helpful information on CS. I am sorry to hear of what you have been enduring. Living with CS is difficult, but I believe the support here will help you through it. There's also a group of people with CS on Facebook that is really helpful. I just went there to get the email address to you, but see you are already a member there, so that's great!
79. • CommentAuthorSeattle
    • CommentTimeNov 23rd 2009

     # 79Report Post
    Hello Everybody,
    Has any one have tenosynovitis or viral tendonitis? Mine came on suddenly in September and now I can barely straighten out my hands in the morning. They are closed into partial fists when I wake up in the morning and it takes hours for them to relax enough for me to hold the soap. They do not think it is connected to my Cogan's yet they have no idea where it came from. So I am back on Prednisone. My doctor's answer to everything.
80. • CommentAuthorkellideister
    • CommentTimeNov 24th 2009

     # 80Report Post
    The only time I have experienced that with my hands and with my legs is when I was critically low on Potassium and was hospitalized for it. My hands would also make a partical fist and I would have to use one hand to try to pry the other one open. Since the hospitalization, I have not experienced that again. I hope your doctor is able to find out what is happening with your body and help to fix it.
81. • CommentAuthorSeattle
    • CommentTimeDec 2nd 2009

     # 81Report Post
    Thanks I will look into that. After 3 months of this I could use a solution.
82. • CommentAuthorLindaG
    • CommentTimeMay 26th 2010

     # 82Report Post
    I am posting this message so this thread will appear at the top of the list. Ladyof class, please read the entries and please join us on FB.
    
    LindaG