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- CommentAuthorDeb
- CommentTimeFeb 8th 2009 edited
Greetings, all.
Which autoimmune disorder(s) do you have? I have chronic inflammatory demyelinating polyneuropathy, sarcoidosis, and possibly vasculitis.
Keep fighting,
Deb -
- CommentAuthorbslate425
- CommentTimeFeb 11th 2009 edited
I have autoimmune hepatitis.
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- CommentAuthorKatieC
- CommentTimeFeb 11th 2009 edited
I have endometriosis and possibly low thyroid, feel tired all the time. Thank you aarda for this forum! -
- CommentAuthorhoot2u99
- CommentTimeFeb 12th 2009
<p>I have Crohn's Disease. It was a total shock for me and my doctor when it was discovered during a routine colonoscopy. I've been hearing more and more about autoimmune diseases. Sometimes when I share what I have, I find that the person also has an autoimmune disease or knows someone who does!</p> -
- CommentAuthorvirlad
- CommentTimeMar 20th 2009
<p>Several members of my family have some form or other of an autoimmune disease. I would like to know if this is a common experience.</p> -
- CommentAuthorPatientEducator
- CommentTimeMar 20th 2009
<p>Yes, the predisposition to develop autoimmune disease(s) runs in families. That is why it is important to know if you are an "autoimmune family" so you can tell that to your doctor if you have seemingly unrelated symptoms, which may indeed be autoimmune.</p> -
- CommentAuthordhiggs
- CommentTimeMar 29th 2009 edited
At 18 I was diagnosed with Hashimoto's thyroiditis. I have hypothyroidism. After that, I began having symptoms of menopause with hot flashed and night sweets and my menstruation became more irregular than ever before. Even on birth control it wasn't controlled. I've had drastic vision changes since the two years after my diagnosis. I have constant joint and muscle pain and my lethargy hasn't gotten much better. My memory has deteriorated as well as my hearing and balance. I have continuous upper and lower respiratory infections and have more rounds of antibiotics than most probably get in a life time. Now I have had edema from abdomen to my toes, my blood pressure and heart rate are through the roof. My joints and muscles continuously ache with nothing helping the pain. I've seen a GYN, neurologist, PCP, ENT, endocrinologist, and this week will see a cardiologist.
Ever since I first became ill my health has spiraled out of control. My TSH levels remain good and I have it checked monthly to every other month.
My mom and aunt and I all began having problems starting with thyroid dysfunction at the same time. I live with my parents who lives nextdoor to my aunt. We all began to have problems after moving into our new houses.
There is much more I could say. If anyone has questions or comments, I could elaborate more.
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- CommentAuthorPatientEducator
- CommentTimeMar 30th 2009
<p>Have you been to a Rheumatologist for a complete workup? That would be the best type of physician to see when you have joint and muscle pain.</p> -
- CommentAuthordoxie4
- CommentTimeMar 30th 2009 edited
I have chronic autoimmune hepatitis that was diagnosised 18 yrs ago - by a wonderful MD. I have since been on Prednisone & Imuran. I've had flare-ups occassionally and my MD was always able to get it under control with adjustments to my Prednisone - yuck!.
But now over the past 2 years my levels are very high - and large doses of Prednisone are not working any longer. I just had another biopsy and it showed me at a stage 4/4 for scarring and cirrohosis - again - yuck! I now am seeing a Hepatologist and he is trying a new medication called Entocort EC. I just started it last week so - we'll see.
I would love to hear from any others who are dealing w/ this type of hepatitis. -
- CommentAuthorAthyna
- CommentTimeApr 8th 2009
Howdy! I just signed up and thought I'd jump in.
Psoriasis and psoriatic arthritis here. *waves* -
- CommentAuthorbbw0827
- CommentTimeApr 9th 2009
Hi, I just joined the group. I was recently diagnosed with rheumatoid arthritis. I've had fibromyalgia for 20+ years which is still debatable on exactly what it is. My main problem is fatigue. I can take pain meds for the pain but it seems like I have crippling fatigue every day. It gets frustrating. My doc wants me to try to get off of prednisone so we are now trying Orencia. I've tried every other biologic with undesirable side effects. I'm keeping my fingers crossed for this one. I am also about to be tested for Crohn's disease. Fun, fun. -
- CommentAuthorGenloop
- CommentTimeApr 9th 2009
I have lupus. I was dx. with lupus three years ago. My lupus is in my joints,lungs, heart and now in the brain. So you can say the lupus bug has bitten my whole body!! I have fatigue very bad. But I still get up each day and enjoy life. I worked up till ten months ago. Just got approved for ssd. Gen -
- CommentAuthorEllie
- CommentTimeApr 9th 2009
I have chronic autoimmune hepatitis, Dx 3 years ago. Was stage 4 damage when I started at the beginning now only stage 2. I take Prednisone only. I have good days and bad days - muscle & joint pain. I get sick all the time and have to take antibiotics. But I do feel much better from 3 years ago. Now that I have learned about autoimmune I can see that I have had others when I was younger - endometriosis, etc. My face looks like a big fat moon from the prednisone... -
- CommentAuthorbbw0827
- CommentTimeApr 9th 2009
Ellie - Do you have bone weakening issues from being on Prednisone? I've been on it for 15 months but I now have osteopenia from it. My doc is trying to get me off of it but I can't function without it. I also have the moon face from it and have gained quite a bit of weight. I wish I could function without it, but not so far. -
- CommentAuthorEllie
- CommentTimeApr 9th 2009
Hi bbw0827: I had osteopenia when I started the Prednisone, now I have osteoporsis, going for a bone scan in a few weeks to see if it is worse. I also gained quite a bit of weight - mostly in the stomach. -
- CommentAuthorSnowshoo
- CommentTimeApr 9th 2009
Hi all,
I was dxed with Lupus in '98, autoimmune hepatitis in '00, and Myasthenia Gravis in '02. Nothing new since. They are relatively well controlled, with some small exceptions, of course. The hepatitis had been in remission for 3 years, until recently. We have increased the pred in hopes it will tame it back down. The only other med I take to control them is Mestinon, for the Myasthenia. I tried Imuran, but got pancreatitis from it, so we stick with the pred...which is the devil's bane. My mother had lupus, a half-sister has Sjogrens and Rheumatoid Arthritis, and a cousin has MS. So, it's definitely 'in the family'.
Laurie -
- CommentAuthordryspell
- CommentTimeApr 9th 2009
Hi,
Primary Sjogren's syndrome here.
dryspell -
- CommentAuthorMartha
- CommentTimeApr 9th 2009
I everyone I just joined this forum. I have endometriosis, Lupus, MCTD also have osteopenia of the spine. I have so much joint & muscle pain. chronic fatigue as well. So tired all the time. can't take any storids because I'm a diabetic type 2 and my drs won't risk putting me on prednisone not even a low dose. I been so so many different meds some help for a while then stopping working. -
- CommentAuthorLori G
- CommentTimeApr 9th 2009
I have Cushing's Disease. This resulted in fibromyalgia. I've actually got all kinds of things going wrong. I'm on many meds. and use a powerchair. The use of my powerchair has decreased as I continue to gain back the strength I lost from Cushing's related atrophy of my muscles. It's a slow recovery and I don't know if I'll ever get back to being able to work, but things are on the up side. -
- CommentAuthorMartha
- CommentTimeApr 9th 2009
Hi Lori I have Fibro as well and I am on many meds also. 29 to be exact. I have many health problems. I got from using a cane to my walker depends on how much pain I'm in. sunday I will be 39 years old and I feel so old. I hear all the time you are so young and you are on so many meds and have so many health problems as If I caused them myself. I have my good and bad days right now its bad been having flare up for the past 3 days now. haven't eased up yet. -
- CommentAuthorLori G
- CommentTimeApr 9th 2009
I'm looking over the posts and a lot of them sound like Cushing's. Don't trust a dr. to persue this diagnosis. You have to push for it. Moon face, hot flashes/cold sweats, Hoshimotos', tired, joints ache, narcolepsy, weight gain in the abdomen, buffalo hump on the upper back, purple stretchmarks, can be caused by steriod use(prednisone, asthma inhalers), skin changes, etc. Look it up. It took me forever to get a diagnosis. The tumor actually grew to the main artery to the brain because they wouldn't listen to me and check sooner.
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- CommentAuthorLori G
- CommentTimeApr 9th 2009
Hi, Martha, I know how you feel. This all started back in 1995, at least. I'm 41 and my body says 70, haha.
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- CommentAuthorMartha
- CommentTimeApr 9th 2009
thats what I'm dealing with now for the past 6 years now hot flashes/ cold sweats, I have an appt on the 20th to talk to the drs about possibly having Cushings. took me forever to get dignosised as well no one would listen to me either with the exception of my psychiatrist. she knew that it was Lupus that I had but noone eles would listen to her. -
- CommentAuthorMartha
- CommentTimeApr 9th 2009
Hey Lori, mines go back to 1988 and Finally 2 years ago I started getting the help that I needed. by the way nice to meet you. -
- CommentAuthormjhay
- CommentTimeApr 10th 2009
I have several autoimmune diseases,Hoshimotos, Birdshot Choroidopathy, IBS, and some they don't even have a name for.
My immediate family's autoimmune diseases include Hoshimotos, Celiac, Myetonia, Raynaulds, Scleroderma -
- CommentAuthorsbillington
- CommentTimeApr 10th 2009
Hello everyone. You don't know how happy I am to see this forum. I was diagonsed with MCTD with a presentation of trigeminal neuralgia on the left side of my face. The left side of my face is numb (like I was coming off novacaine) but the pain is sometimes very bad. I take cellcept and neurontin for immune suppression and pain. Some days are really good but the others are bad. Of course, along with that, I have osteopenia, rheumatoid arthritis, Hep C that is level 1 (never had a problem with it yet). I recently had an episode where I lost about 2 minutes of time. I was in a group training with my dog and went to do something and the next thing I remember was standing next to one of the other dog persons. Strange! Did another MRI brain scan and found no significant changes.
I am just so happy to talk to other people who have strange diseases and who will probably understand what I go through.
Thank all of you so much. -
- CommentAuthorLori_greenacres
- CommentTimeApr 10th 2009
I have Hashimotos & Celiac Sprue.... would love to get more information on how to deal with it during pregnancy. Autoimmunity runs in family with Lupus, Diabetes, etc.... -
- CommentAuthorMexicoFran
- CommentTimeApr 10th 2009
I have scleroderma, psoriatic arthritis, hypothyoidism, lichen planus, and lichen sclerosis. At the moment, psoriasis is my biggest complaint. I am now 73. Lichen planus first appeared in my thirties, before it was not known to be an AID. I see a rheumatologist in Guadalajara, Mexico, who is excellent. I have tried Enbrel with zero improvement. I am currently taking Arava 20 mg daily plus Prednisone 5mg. It isn't enough, so back to the rheum. -
- CommentAuthorAhudson505
- CommentTimeApr 10th 2009
All I have is Vitaligo, on my hands and neck. It appeared overnight, and has faded over the past 5 years. It never got worse. I'm not aware of any other autoimmune diseases yet. Should I look for one? -
- CommentAuthorSnowshoo
- CommentTimeApr 10th 2009
Autoimmune diseases are like Lay's potato chips...you can't seem to have just one LOL! Don't go looking for another one, Ahudson, just be aware that it's likely there will be another at some time. -
- CommentAuthorvlwood
- CommentTimeApr 10th 2009
Hi, all! My diagnoses so far have been cicatricial pemphigoid (also known as mucous membrane pemphigoid) and vitiligo, and I'm pretty sure I have at least one other, maybe Behcet's Syndrome (a.k.a. Behcet's Disease), maybe pernicious anemia, maybe primary biliary cirrhosis, and/or who knows what? The symptoms overlap.
An organization called The Autoimmune Disease Research Foundation (ADRF) promotes the idea that "autoimmune disease should be regarded as one disease that is manifested as many distinct syndromes". Maybe that makes sense.
To sbillington: I've had face pain and numbness for years, too. Don't know whether it has anything to do with the autoimmune stuff.
I guess you all know that if you're taking steroids, the ostopenia and osteoporosis are just part of their awful side effects. Any of the meds can be worse than the disease. I'll take them only if I absolutely have to.
Hope we can keep these forums going! -
- CommentAuthorCountryCutie22
- CommentTimeApr 13th 2009
Thank goodness for this forum!! It is nice knowing there are others out there... I am 16 and have had 2 years of doctors trying to find out what is wrong. My ANA test was through the roof high, but they still do not know which disease I have. They think I have lupus, but in the early stages because I do not meet all the criteria. Currently I am being treated with Plaquenil and am being homeschooled... If anyone has any opinions whether or not Plaquenil works please let me know!!! Thanks!!!
Hannah -
- CommentAuthormakbbt
- CommentTimeApr 14th 2009
Hi, I have Common Variable Immunodeficiency (seven years to Dx), and Primary Angiitis of the Central Nervous System.
Prednisone is destroying my skin also (and other issues) but at least it's keeping the other neuro problems under control. -
- CommentAuthorkaki
- CommentTimeApr 14th 2009
Primary Immunodificiency and Rheumatoid arthritis with secondary Raynaud's. I'm taking Plaquenil and occassional predisone for flares. I'm still working, but struggling with it. I've missed lots of works due to infections, and I'm plain worn out!
Hannah: Plaquenil has helped with the stiffness in my hands. Everyone tells me to stay on it, since it may help keep things at bay. I did seem to keep things quiet for about 3 years. Now, I'm afraid I've moved on to bigger things. -
- CommentAuthorjlbaughn1
- CommentTimeApr 14th 2009
I was diagnosed with Systemic Scleroderma, Raynauds and fibromyalgia. I also have osteo-arthritis, which began at an early age. It seems that all of these diseases can be linked to one thing: autoimmune disorders. It has taken a devestating toll on my ability to hold a job, or even do everyday chores. But I feel that I am very fortunate that I can still get up in the morning and attempt to live a somewhat normal life. Just one day without pain and mobility issues would be incredible. I cannot take anti-inflammatory medications because I am highly allergic. So my doctors just treat the symtoms. -
- CommentAuthorAmyP
- CommentTimeApr 14th 2009
Hello. I'm really glad to see this forum out here.
I was diagnosed with Behcet's Disease in 2001 and then in 2008 with scleritis. Two very rare autoimmunes, so it would be cool to find someone on this forum with similar diagnoses.
Autoimmunes in my family include Rheumatoid Arthritis, Scleroderma, Crohn's. -
- CommentAuthorNancy Towns
- CommentTimeApr 14th 2009
I'm 60 and was diagnosed with AMA-negative Primary Biliary Cirrhosis in Jan 2009 and Celiac Sprue in Dec 2008. I'm asymptomatic for Celiac but I've been on a strict gluten-free diet since my confirmation by a biopsy. My liver biopsy showed that my PBC was caught very early and my prognosis is good. I'm taking 50mg of Urso Forte twice a day for the PBC and my LFTs are beginning to approach normal levels, but I'm experiencing a great deal of fatigue and pain in the liver area. My Hepatologist can't explain why I'm having so much pain. I'm also having difficulty dealing with the gluten-free diet and the restrictions of the liver diet. I would love to talk with someone with similar problems.
In addition to the symptoms of the diagnosed diseases, I'm also developing swollen and sore joints in my fingers and a rash around my eyes, nose, mouth, and neck. I'm seeing a Rheumatologist who is testing me for Lupus and Rheumatoid Arthritis. I'll get my results this week on the 21st.
I have numerous allergies to drugs and to several air-borne allergens
I also have a couple of other disorders that are not autoimmune but contribute to my medical profile. I have Fibromuscular Dysplasia of the Carotid Arteries for which I'm on aspirin therapy and a calcium channel blocker to prevent stokes. I also have a Cavernoma in my brain that my neurosurgeon at Mayo Clinic thinks is the cause of the Migraines that I've had since I was 5-years-old. He put me on Topamax last Jul 2008 and I haven't had a Migraine since Aug. My Hepatologist is going to check the next time tests are run on my liver to see if Fibromuscular Dysplasia has affected my Portal and Renal Arteries.
My family has several members with autoimmune diseases. My sister has Rheumatoid Arthritis, my father had Diabetes, and I think my mother had Celiac Sprue. Almost everyone in my family is allergic to something. -
- CommentAuthorgail
- CommentTimeApr 14th 2009
Hi folks/ What a great site this is. I have just joined in. I am happy to say that I have been in remission for the last two years. I have Polyarteritis Nodoso. I was dxed in 2000 by a freak biopsy. A dermatologist was looking for something else when he biopsied a lesion on my leg. He was shocked at what he saw under the microscope. I got a real early start on the right meds. The derm referred me to a great rhuematologist. It's been 8 or 9 years since that awful diagnosis.
I,too, have osteopenia (sp?) from all of the steroids. Can't be helped but I get the calcium, and Vit.D every day. I have really bad periferal (sp?) neuropathy from the other meds. Some days are better than others. I still have the fatigue to contend with. Symptoms just never go away, I guess. Auto-immune diseases run in my family. My uncle, me, my son, my daughter, my grandson, etc. (so, Other than that, Mrs. Lincoln,how was your day?) -
- CommentAuthorLaurie from Ontario
- CommentTimeApr 16th 2009
Hi there: I have had sjogrens syndrome for years, primarily affecting my eyes. When I was 35, my optomitrist said that my eyes were so dry & scratched that I had the eyes of an 80 yr old women with lupus. I live with daily pain. It feels like someone has thown a handfull of sand in my eyes. Every few months they get so bad that I have to use steroid drops. Has anyone found anything that helps. I also have raynauds, that only really affects my toes. (fingers are fine) I got mono when I was pregnant with my oldest daughter which never really went away. I believe I now have chronic fatigue. -
- CommentAuthorDannie
- CommentTimeApr 16th 2009
Hello, I have just been recently diagnosed with AS (Ankylosing Spondylitis). -
- CommentAuthorAthyna
- CommentTimeApr 17th 2009
Earlier I posted that I have psoriasis and psoriatic arthritis. I went to the rheumie this morning and the bloodwork was positive for antibodies present in scleroderma. Yay... bleh. So, off for an echocardiogram, chest CT and PFTs.
She asked how I was doing, and it's hard going from someone who's been told they're a textbook example of perfect health to everything going wrong at once. The worst part, I used to do 'too much', that's what my family said. "You can't hold down 3 jobs and go to school at once!" Ha, I did. Now though, I need a nap after going anywhere. -
- CommentAuthorsunshine
- CommentTimeApr 17th 2009
I was diagnosed with Hashimatos disease in 2006. Since then I have had I-131 treatment for a goiter and my thyroid. I had an overactive thyroid, (hyperthyroid) complete with the shakes, heart palpitations, sweats, and anxiety. I thought I was going to die! Then I developed severe Graves Eye Disease, and the muscles in my eyes swelled enormously and caused me great pain, constantly, because there was no longer any space behind my eye for the muscles to be. So they pushed my eyes forward and were closing in on my eye nerve. I would have gone blind, if my eye dr did not do orbital decompression surgery with the stealth instruments. Then 6 months later I needed eye lid lowering surgery, because my eye lids were not closing completely. Now I have my hormone level under control with levothyroxine, and am hypothyroid. My eyes are still watery and itchy and dry at times. Things were going great for a couple of months, and I thought I was getting back to normal. Then I started to develop pain in my ankles, my legs and ankles and wrists started to hurt and become swollen. I went to a rheumatologist, and after he took 5 viles of blood and did several autoimmune tests, I now am diagnosed with Sjogren's syndrome. So I am taking 400 mg per day of Plaquinal and 7.5 mg of Meloxicam a day. It really has helped.
To the person who has balance problems, I had that too, I was falling down all the time and balance problems. Then I read that potassium helps this. I started taking potassium pills, and it helped me almost immediately! Maybe it can help you too. Eating bananas doesn't give you enough. The supplement helps.
So now I am feeling better again, and hopefully this time it will last a while. I am searching for a job, after being home sick for the past few years. I want to get out of the house and be productive again. Plus being sick, has put a financial strain on the loss of savings, and accumulating debt. I need to start working again to bail us out. -
- CommentAuthorpamt
- CommentTimeApr 20th 2009
HI....Newbie here...to this site, not AI diseases! :-( Nancy Town, I, too, have PBC (primary biliary cirrhosis for those who don't recognize these initials---seems like we all deal w/initials). You mentioned that you were on 50 mg of urso forte 2x a day....did you mean 500 mg 2x a day? The drug is a wonder. I was dx'd 10/08 although at end stage 1 early stage 2, I have had it for prob almost 10 years and never knew. Jan. of 08. I went to gastro md to find out why I had pain in my abdomen under left breast bone. After endoscopy she said it was gastritis prob from taking baby aspirin for the heart for 2+ years. So, discontinued that. But the issues continued and months later, from my continued sleuthing, found out about the liver disease. Yes, as many of us are perplexed with this diagnosis, I don't drink either. I find myself saying that to those who ask what PBC is and then they look at you in askance when you say the 'cirrhosis' word! :-(
I also have Hashimotos (hypothyroidism dx 31 years ago), oral lichen planus and lichen planopilaris. Anyone out there with the last two? -
- CommentAuthorlasi17
- CommentTimeApr 20th 2009
Greetings, I'm Liza Jane Boulden, and have lived most of my 49 years in South Jersey. I was first diagnosed with Vasculitus when I was 19. The auto- immune stuff was fairly dormant for almost 4 years. Since then, it's been full force crazy! I've been on prednisone for 25 years, with a diagnosis of pyoderma gangranosum in 1996. The PG has been better the last few years, but I have a host of serious problems from steroid use. I have been "all over" trying to find the ellusive cure. I'd love to be of any help to all of you auto-immune sufferers! -
- CommentAuthorEllie
- CommentTimeApr 20th 2009
Anyone out there with chronic autoimmune hepatitis? I am having lots of joint & muscle pain, lots of trouble with my feet & lower legs but my Doc says it is not from my CAH anymore - it was when first dx and all my counts were high. Pred has been decreased and counts are at lowest since dx. Anyway any ideas why I hurt so much? First time in over 3 years was not happy with my Doc - he seem to just shrugg it off - I am going to call my regular primary MD and she if she can figure out whats going on. -
- CommentAuthorvlwood
- CommentTimeApr 20th 2009
Ellie, are you taking any other meds? Some meds can cause serious leg pain that can be the beginning of more problems. Don't just go by the "side effects" info that comes with the pills. Search every medication on the net and you'll always find more! -
- CommentAuthorEllie
- CommentTimeApr 20th 2009
vlwood: Thanks, I never thought it could be my meds, I will look into it. -
- CommentAuthorjonnell
- CommentTimeApr 21st 2009
Hi Liza where in south jersey do you live I live in Millville and have a 4 year old little girl with sjogrens syndrome. Jonnell -
- CommentAuthorJo1
- CommentTimeApr 21st 2009
Lori_greenacres,
A balanced gluten-free diet should bode you well with celiac and pregancy. Celiac disease is the only autoimmune disease with a known trigger. The only treatment right now is a gluten-free diet. I have Type I diabetes, also an autoimmune disease. -
- CommentAuthorbburt510
- CommentTimeApr 21st 2009
Hi, I'm glad to see this blog. I have PMR Polymyalgia Rheumatica, altho there is not a specific blood test for diagnosis. Right after Christmas I was so sick and thought I had the flu. I woke up on December 29th with such severe pain in my neck, down my arms, hands and fingers that I thought I was having a stroke. I went to the ER but the the doc who only took xrays, said I sprained my neck. The next Monday, I could barely move when I went to my pcp. She ordered a ton of blood tests, CT, MRI of neck, xrays hands, etc. Well my sed rate rate was 86 and my CRP was off the chart (can't remember right now what it was) but I had to rush to an eye physician for immediate evaluation. Now, I can't legally drive without my glasses! My pcp put me on prednisone for a week and it helped right away but she said it is too dangerous to stay on long term. The MRI and CT showed I have crushed verterbrae in my C4, C5 and C6 with impingement.
So I was sent to a rheumatologist and a neurologist. I had EMG's on both sides with the neurologist, physical therapy for 16 weeks, medication prescribed was Lyrica which really does dull the headaches plus I've had three injections in the nerves in the back of my neck. The injections were great but they only last a few days and of course you can't take more than 3. So I'm just taking the Lyrica for the head and neck pain.
Now for the rheuatologist. After he examined me he handed me a paper he had printed off the internet and said "you have polymyalgia rheumatica. So he started me back on prednisone and (4 mg tabs) 4 pills a day. He left me on this for 4 weeks and then we began the tapering. He also introduced Methoreexate 4 2.5mg once a week. Once I got to 2 tabs a day I was in so much pain in my shoulders and arms I would lay in bed at night with tears streaming down my face. When it was time to see him again he said I could take 3 pills of prednisone one day and 2 the next. THEN he ordered more lab work and found my sed rate was really elevated and my CRP. So he sends me a letter in the mail and tells me to increase the Methotrexate to 6 pills a week. I just started this today.
It is hard to explain my pain to others, especially my husband who is never sick. He is great about taking me to see my docs. (They are 125 miles away) I get so depressed about feeling sick and hurting I seem to cry a lot when no one is around.
I went from a person that worked 10-12 hours a day 6 days a week to someone who does okay with doing laundry, light housework and cooking meals.
I have scoured the net on PMR but there isn't much out there. I also have been wondering why my pcp can't do the same thing my rheumatologist is doing.Anybody have any thoughts on this? My pcp ordered a done density study and of course I have osteoporis and she ordered Boniva. Can you believe Boniva is $30 a pill with insurance and $125 a pill if you're self pay??? They wonder why we need health care reform!
Well, I've written long enough. I'll check back tomorrow.
Thanks,
BarBara -
- CommentAuthormjhay
- CommentTimeApr 22nd 2009
My sister and I both had leg and foot pain-neuropathy, that was helped with Cymbalta, maybe worth asking your MD about. I have a great Internist who sends me to specialists when need but also follows up with the specialists so he does manage my care and knows what is going on and if I think he doesn't know something I email him to let him know. It is very important to keep the communication going, asking questions and some times being a nag. You know your body better than anyone. -
- CommentAuthorNancyg
- CommentTimeApr 24th 2009 edited
Hi, I just found this site. Have you all noticed that people with multiple autoimmune diseases are Type A, never give up people? I belong to another support group for MG and we are amazed at our similarities. I have 8 to 10 autoimmune diseases, the three most serious are Addison's, Myasthenia Gravis and an extremely rare type of AI glaucoma that is rapidly taking my vision. I'm on 20 mg prednisone a day (plus tons of other meds) and get IVIG therapy once a week at home. I took Cellcept for 2 years but it didn't seem to help. I'm beginning to consider a motorized wheelchair even though I really don't want to give in to it. Now I'm being tested for AI hepatitis., MCTD, Sarcoidosis, etc. I also have problems keeping anemia under control and have undergone iron infusions but it comes back.
Number 1 rule for AI patients is BE YOUR OWN ADVOCATE! Don't let doctors bluff you. If one doesn't listen....move on. It's taken a long time but I finally have a good medical team.
Has anyone heard of Immune Reboot treatment? I am seriously considering it and have started a writing, calling campaign. It is similar to a bone marrow transplant but not quite as extreme. They save a few of your cells. Johns Hopkins has had good success with it for MG, Type 1 Diabetes, Lupus, MS and I'm wondering what it would do for a person like many of us who have a pile of AI diseases. -
- CommentAuthorvlwood
- CommentTimeApr 24th 2009
That's an interesting comment about the "never give up" people. Maybe that describes those of us who have actually managed to get diagnosed. For many of us, the struggle with doctors has been almost as bad as the disease(s). If we had given up, we would not have been diagnosed. -
- CommentAuthorNancyg
- CommentTimeApr 24th 2009 edited
I think that may be true but we are also the ones who don't want to give in to the disease or diseases and keep thinking we can go on carrying all of our responsibilities, doing for others, working, etc. We all have to go through the 5 stages of grief and learn to accept our new "normal". There are still lots of things we can do but to continue to force our bodies will do more harm. It usually takes 2 to 20 years to get a diagnosis. I have 7 (new figure 8-10) AI's and it's been a royal battle. This is my list: MG, Addison's, very rare AI glaucoma, AI thyroid disease, RLS, Allergic asthma, allergic rhinitis (both on the AI list), AI hyperlipidemia. I also have Fibromyalgia and chronic anemia requiring iron infusions plus Barrett's Esophagus (caused by GERD which is on some AI lists). I get IVIG weekly for MG which costs $8,000 per treatment (for the IG alone). Thank the Good Lord, we have insurance. In spite of all the above...when a good day comes along....I tend to think I'm cured.....LOL and overdo. My IVIG cost alone is $94,000 a quarter. Thank the good Lord for insurance. -
- CommentAuthorteresa
- CommentTimeApr 25th 2009
Hi,
I was just diagnosed yesterday with MCTD. My daugter, age 22, has many symptoms and was originally diagnosed with lupus, but no diagnosis presently. She will be seeing her rheumatologist again soon for another workup. She also just started on B-12 injections because she has a marked deficiency of B12. Her internist just drew blood to check her vitamin D level as well. Does anyone else have similar issues? -
- CommentAuthormeccdj
- CommentTimeApr 30th 2009
I have recently been diagnosed with Mucous membrane pemphigoid and would like to talk to anyone who has this disease. -
- CommentAuthorvlwood
- CommentTimeMay 1st 2009
YES, meccdj. Glad you posted! MMP (also called cicatricial pemphigoid) was my first autoimmune diagnosis, in August 2007. You can find a lot about it at www.pemphigus.org, the website of the International Pemphigus and Pemphigoid Foundation. The reason I post here now is that, like a lot of people, I've found that I have more than one autoimmune disease. The best advice I can give you is to study up on the disease and on any medication that the doctors want you to take. I'll be glad to hear from you! -
- CommentAuthormeccdj
- CommentTimeMay 3rd 2009
VLwood What meds are you taking for MMP. I am on just topical medicine right now. -
- CommentAuthorvlwood
- CommentTimeMay 3rd 2009
The short answer is, I'm taking no prescription meds at present. I do take Vitamin B-12, which can become deficient with some autoimmune disorders, and Vitamin D, which may be good for autoimmune problems, and most of us need it anyway, and rutin to strengthen blood vessels because I get occasional spots of bleeding under the skin.
At the time that I got diagnosed, my main symptom was mouth sores, so I was prescribed Triamcinolone, a steroid mouth rinse. It caused fluid retention to the point where my ankles hung over the sides of my shoes, and my blood pressure, which runs high anyway, shot up. That was too dangerous, so I tapered myself off of the med. Tapering off may have saved me from having a stroke, but it made the oral pathologist angry to the point where she threatened not to treat me any more. That was fine with me.
She did then prescribe a steroid gel, to be applied in trays on the teeth. Of course the gel had the same side effects, and I soon tapered that off, too.
I searched for alternatives and tried many herbs, supplements and diet changes. While I didn't get clear results from any of them, my mouth continued to very gradually get better, as it had been doing anyway for more than a year. I do have one other autoimmune diagnosis (vitiligo) and have had probable symptoms of many others for years. Just couldn't get diagnosed. At present, none of the symptoms, as far as I'm concerned, are as bad as the meds that are used for them, and my current doctors (family practice, ophthalmology, dermatology) agree with me on that. The B-12 seemed to help tremendously with G.I. symptoms.
I'll take the meds if I have to.
Of course every situation is different. I hope you're doing well. -
- CommentAuthorrbwalton
- CommentTimeMay 4th 2009
I know I have Parsonage Turner Syndrome. What I did not know until last week was that it is considered an autoimmune disease. Well, at least a sub-set of PTS is caused by autoimmune disorder. It can also be caused by other things, which I guess is what makes these things so hard to diagnose. Before last week, they thought mine was caused by a virus. Trouble with that theory was that I have had two acute attacks, and that is rare with PTS caused by other problems. It does however fit the autoimmune version. By the way, PTS impacts the body’s nerves at the level of the major plexus points- Brachial, Lumbar, and Sacral plexus, causing some paralysis and weakness at whatever limbs the impacted nerve enervates. In my case, it is both arms, both hands, (although it is worse on the right side), and both legs. -
- CommentAuthorvlwood
- CommentTimeMay 4th 2009
Now that you're into autoimmune diseases, you'll find out that sometimes they're believed to be triggered by viruses. Multiple sclerosis is one that (as of the last I read about it) doctors were theorizing that first there's a viral attack of some kind, followed by an autoimmune reaction that becomes permanent.
There are various ideas out there about the details of how that might happen.
If that's correct, then maybe the same thing could happen with your disease. Maybe a viral infection led to an autoimmune disorder.
Welcome to the club, even though I know you'd rather not belong! -
- CommentAuthorrbwalton
- CommentTimeMay 4th 2009
Thanks- I think. I see your point. I do not get sick much- I guess it is possible my immune system just forgot to turn itself off at some point. There is also a chance that my problem may be due to a chromosome defect, but that particular problem is even rarer than what I already have had confirmed, and I have no family history that can be verified to suggest it is the genetic type. And I guess with the absense of other family cases no one wants to explore further. That, and the test is not cheap. No one has suggesed trying it. . . -
- CommentAuthorvlwood
- CommentTimeMay 4th 2009
What kind of treatment are you getting? -
- CommentAuthorrbwalton
- CommentTimeMay 5th 2009
Nothing at this point. Just pain stuff or anti-inflamatories for the occasional flare-up- Nothing else much to do. -
- CommentAuthorRocky
- CommentTimeMay 8th 2009
<blockquote><cite>Posted By: Deb</cite>Greetings, all.
Which autoimmune disorder(s) do you have? I have chronic inflammatory demyelinating polyneuropathy, sarcoidosis, and possibly vasculitis.
Keep fighting,Deb</blockquote>
Deb, I also have CIDP. My auto-immune was triggered by cancer. Apparently breast and/or ovarian cancer often triggers an AI response of one sort or another. I think I could've done without this one, however. I'm fairly newly diagnosed, so don't know yet how far or fast this will progress. -
- CommentAuthorpammy
- CommentTimeMay 9th 2009
hi I just shared some of my diagnosis on the share your story, I just had to vent there. My diangosis: SLE, Discoid Lupus, Raynaud's, Interstitial Cystitis, Pelvic Floor Disfunction, degenerative arthritis in my S.I joints, Reider's, hashimoto's, secondary hyperparathyroidism, sarcoidosis, now possible systemic sclerosis, fibromyalgia, chronic fatigue, chronic pelvic pain, myositis, enlarged liver, fluid in my lung, chronic laryngitis and rhinitis, erythmatous pharynx.
I have insomnia, my hair is falling out, I am having difficulty moving my hands because the skin feels like it's getting tighter, I have three different rashes on my legs two of which are extremely itchy and look like blisters or poped pimples, I had a nerve conduction done on my left leg which showed the muscles are working at a 30% capacity, my face burns, it flushes, the butterfly rash gets darjer and lighter depending on how I feel (it's my own little mood rash ahahah), I have constant heart burn, vomit when I bend over, total loss of apetite, I'm dehydrated (I don't know how because I have excessive thrist) I am having an interstim installed because I have to strain to pee, and yet I also have incontinence (shouldn't that be an oxymoron?) I limp, I hurt all the time, most recently my left hip has become unabreable. And I have started to look for ways to buy life insurance just incase. I am only 33 yrs old. I should be at the prime of my life, and a couple of years ago I was. Now I have no sex drive whatsoever. I am depressed and scared. -
- CommentAuthormeccdj
- CommentTimeMay 9th 2009
VLWOOD glad to hear your mouth sores are starting to get better. How long have you been dealing with mouth sores? Several of my doctors have said the mouth sores could just go away eventually. My doctors do not want to put me on steriods at this time either. One of the problems I am having is dry and stinging eyes. Do you have that? -
- CommentAuthorbheithcao
- CommentTimeMay 16th 2009
I have recently been diagonsed with Addisons Disease and which added to my type 1 diabetes and thyroid condition have been playing havoc with my body and mind. The steroid used to treat thte Addison's has also caused some mental issues which is making it increasing difficult,
So I have been told that this is all related to or caused from Polyglandular Autoimmune Syndrome Type 2... -
- CommentAuthortgomez
- CommentTimeMay 20th 2009
I have severe Atopic Dermatitis,allergic rhinitis,allergic asthma,dry eyes very itcy with yellowish discharge every day.Corneal abrasions that hurt so bad that i feel that i have sand in my eyes.I suffer every day.I am 39 years old former nurse.Presently not working due to severe flare up of the dermatitis.
In 2005 is when my health started to decline.I went on disability for 2 years and wanted to go back to work so badly at that time just because i felt a little better.
In 2008 i started to work,unfortunately my skin flared up so bad and i had to be off work in March 2009.Most probably i will have to go back on disability again.
I am still in denial about my illness,however i have a good support system.I have to learn to come to terms with my illness which is the difficult part.This will be 2 time that i am put on immunosuppresents drugs that can cause liver toxicity.I also have a family history of severe allergies and my sister was recently diagnosed with Hashimoto"s Disease.
I struggle with my skin's appearance for a very long time.Some days are better than other's.
Does anyone know anyone who is like me?
tgomez -
- CommentAuthormjhay
- CommentTimeMay 20th 2009
Just wanted to ask a question; I currently have several autoimmune diseases; that have been under control until recently; my prednisone dosage is at 30mg a day tapered from 40mg. I was on 10mg per day for years until I developed scar tissue from autoimmune disease. Now I am home sick with the Flu--not sleeping caughing all the time; the doctor says I need to stay home for at least two weeks. Should I expect another autoimmunce disease to surface? Should I prepare myself>? -
- CommentAuthortgomez
- CommentTimeMay 21st 2009
My autoimmune disease is not listed.However,judging from the fact that the dermatologist and immunologist have all come to a point of exhaustion indicates that it may be a form of an aotoimmune disease.My body has become resistant to steroid treatments.So the next step of treatment is to try immunosuppresants.
I was on Methotrexate for 11/2 years starting with a high dose and tapering to a maintenance dose while i worked.When i finally came off the medication,i had another flare up!!!!
Now i am on Azathioprine 100mg a day.There is still no result from this treatment as my skin is still the same as it looked before.If anything at all is that i am fatigued by this treatment and feeling bloated and gained some weight.I don't feel healthy at all.I am not working right now.
I have been on Prednisone 50mg before too and it made no difference at all.
Maybe you should (MJHAY)seek another opinion from a different doctor as well.
I am sorry to hear that you have been ill.You can only take one day as it comes.I am trying to learn to be patient to accept my suffering something which is so hard to do.
Take care. -
- CommentAuthorwl815
- CommentTimeMay 27th 2009
My 30 year old brother was recently diagnosed with Churg Strauss Vasculitis. He's had symptoms for 2 years, but because it started in his lungs the doctors thought it was asthma. Three months ago he began having abdominal pain and spent 2 1/2 weeks in the hospital. The doctors did every test you can think of and still couldn't figure out what was wrong. They sent him home and a week later he was back at a different hospital because he couldn't stand the abdominal pain.
He was finally diagnosed with Churg Strauss vasculitis but the doctors said they couldn't do anything for him and sent him home after 2 weeks. A few days later he was back in the hospital. He's had surgery to remove a part of his intestines that was damaged by the vasculitis, which may be what caused the pain. He's still in the hospital trying to recover from some complications of the surgery. He's heavily sedated in order to prevent any type of excitement since the vasculitis has reached his heart.
It's been very difficult dealing with this. I've been searching for a place where I can hear from people dealing with this disease or something similar. I'm trying to stay hopeful and reading your stories has helped. -
- CommentAuthortgomez
- CommentTimeMay 27th 2009
Yes w1815 we all are trying to stay hopeful.It is very difficult trying to deal with periods of exercerbations and remissions.The kind of dermatitis that i have is autoimmune too.It is not psoarises.
What we all need is a good support system to help is cope.
Take care. -
- CommentAuthorkd7rq--Ryan
- CommentTimeMay 27th 2009
Hello to all. Was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy in Janurary 1999. Just had Heart bypass and as I was getting out of the hospital I noticed my extremities were tingling. At this stage I was walking but in two weeks I was using a walker. Bottom line. I was put on Plasma pheresis and had 13 sessions. I gained every thing back but the balance. Now I swear I am on every pill known to man. After 10 years a slight tingling is coming back to toes and fingers.
Ryan -
- CommentAuthorRie-rie03
- CommentTimeMay 27th 2009
I am a 23 year old with AutoImmune Hepatitis. I was diagnosed 5 years ago at the tender age of 18. Barely out of high school. I have had my ups and downs and was on prednisone for 2 or 3 years and have been completely off with no flare ups for the past couple years. I am now just on Azathioprine ( including Thyroid, Hormone and stomach medication due to what I think is the Azathioprine)
Reading this forum really opened my eyes to see how many Auto Immune diseases there are and how many people are like me. I continuously pray for myself and all of you who deal with this everyday ( Some may not have a religion, thats ok, I'll pray for you anyway!)
I do have to ask, is anyone on disability? Preferably people with Auto Immune Hepatitis, I want to file but not sure if I should. Not being nosy just curious. -
- CommentAuthortdehne
- CommentTimeMay 28th 2009
I was orininally diagnosed with Rheumatoid Arthritis and then re-diagnosed with Psoriatic Spondylitis. After a lot of research I'm starting to wonder if I'm looking more at Ankylosing Spondylitis instead. My rheumatologist seems perplexed and rather confused by my case. All things considered about autoimmune diseases, it scares the heck out of me when my rheumatologist is confused. He and my primary care doctor have referred me to the Mayo Clinic for further evaluation. Currently, I am waiting to see if Medicaid will approve the visit to Mayo.
Back in 2000, I got on SSI disability due to my bipolar disorder. Now I'm stuck on it due to this autoimmune disease and my rapidially declining health. I am unable to work and in 2008 I had to take a rather forced medical leave due to these health issues. I get so tired of feeling penalized for being sick. -
- CommentAuthorcactusrose
- CommentTimeMay 29th 2009
meccdj, i was just diagnosed with MMP also. So far I'm just using a prednisone/diphenhydramine oral rinse and the sores in my mouth are better but new ones still appear. Have appt with derm June 25th. Have you had other outbreak areas? -
- CommentAuthorEllie
- CommentTimeJun 2nd 2009
Rie-rie03:
Wow so sorry to hear you have an AI so young. I also have autoimmune hepatitis but I am much older - 50. I was diagnosed a little over 3 years ago & still on prednisone - which of course has caused many other problems. Only on prednisone 9 mg a day now.
I am not on disability, I work in an office-mostly just sitting at my desk and boss is very understanding when I need time off. I too have my ups and downs, lots of muscle & joint pain, headaches, stomach problems, osteoporosis, etc...
So the azathioprine keeps your liver working and your labs at good levels? I have read that some actual get off all meds and never have any problems again - but this is a small number, others have to go on meds from time to time and in between no meds and others have to always & for ever take meds - at this time my Dr thinks I will always have to take the meds.
I wish you luck and hope you are in the catagory that gets off the meds for good. -
- CommentAuthorisabelletje
- CommentTimeJun 8th 2009
Dear Rie-rie03,
I have also autoimmune hepatitis. I was diagnosed at the age of 14. At the age of 16 i had a livertransplant. And been taking medication (prednisolon, azathioprine (stopped in 2005) and ciclosporin) ever since. I had a few flare ups (last year and this year) with meds and all...my doctors keep changing the dosage or meds. Hopefuly they will get me a good combition of meds.
I did go to college..but got sick a month after graduation (2005). Nowadays i work mostly volunteer jobs..i studied linguistics..hard to find something!
I do get a social care income from the government (i live in the netherlands). But would like to find a job.
I would say if you think you can handle a job..try to find one..while searching you can file for disability..incase it's hard to find one..or you just don't feel up to it yet.
sincerly -
- CommentAuthormeccdj
- CommentTimeJun 9th 2009
Dear Cactusrose
I am taking an oral mouthwash and a topical cream. I still get new lesions but I do think this treatment helps. My dermo wants me to try Dapsone with the mouthwash and topical treatment. I guess I will try that. It does have side effects and I will have to have my blood checked each week. I have seen a corneal specialist and I do not have any MMP in my eyes but my eyes do sting sometimes when my mouth is flaring or when I eat some kinds of food. Have you had that? I do not have any skin involvement. -
- CommentAuthorcactusrose
- CommentTimeJun 9th 2009
Dear meccdj
Thanks for replying. My PCP had my appointment with the dermo moved uo so now I go see him tomorrow. Iam anxious to see what he recommends and I hope he's treated MMP before. I have not been to an opthalmologist but my eyes seem to be ok. I too get some stinging and dryness when my mouth is worse but I guess I'll know more tomorrow. I do not have skin involvement either; things to be thankful fuor. :) Hope the Dapsone works for you and that the side effects are manageable. I'll keep you informed on my treatment and please do the same. -
- CommentAuthorFancyPantsAndMe
- CommentTimeJun 11th 2009
Hi everyone...I was diagnosed with Hashimoto's in Nov. 2007 and i think I have had it a long time prior to that diagnosis. Changed from my M.D. to a Naturopathic Doctor, she is the one who diagnosed the autoimmune thyroid. Also have Pernicious Anemia (diagnosed in Nov. 2007 as well) and recently after a car accident developed Alopecia Universalis ( no hair at all)..life is interesting indeed. I'm on a path to reverse the autoimmune diseases in my body. My antibody levels for the Hashimoto's are down by 1000 points..so somethings working. I'm using techniques to de-stress, exercising every day and am eating 100% raw organic diet. I feel great, lots of energy from the green drinks I make each morning out of just all the green leafy vegetables I can find locally and organic. I know it is just a matter of time..before the switch gets switched back the other way.
I'll check out the site.
Eat well, live well, be well.
~Amy~ -
- CommentAuthorrmsjohns
- CommentTimeJun 18th 2009
Hi, I just found this site through a friend. I have had Reactive Arthritis for almost 4 years now. It is not a very common disease. And on top of that, 9 men to 1 woman gets it. It is caused by something, like an infection or trauma causing the gene to react and you get this disease that is painful and disabling.
It is a bit like all of yours, bad joints, terrible pain, chronic pain, I have dry eyes and must use 2 types of drops daily. I know very few who have this disease.
My RH Dr diagnosed me day one, by the tightness of my tendons. Seems to attack them, then they pull on the joints and cause the pain, and disfigurement. Similar to RH.
I also was diagnosed with Fibromyalgia. Lucky me, now my muscles get in on the act. And I have neuralgia in my fingers and feet. I have found a great doc who put me on a great treatment plan for pain, exercise and trying to live life.
It is the invisible part of these diseases that makes life hard. I dread going to the grocery store and getting in the wheel chair cart. I just cannot do it yet. So, I don't go because my limit is about 30 minutes. Either the fatigue hits, or the terrific pain.
How do we cope??? How do we accept limits when we lost 20 or 30 years of our good lives. I am in my early 50s and we are almost empty nesters who finally have some means to do a few trips and enjoy life. Sure we loved family life with 4 children, but that meant putting our vacations on hold. I chose to stay at home until the youngest was 8. I do not regret that, and I loved working the last 10 years. But losing me and the ability to do things, especially with my husband makes me feel cheated. I cannot imagine how someone young feels. I think many of us suffer from the grief of losing ourselves into a silent disease.
I have chosen to use conventional medications and supplement with vitamins that the DR OKs. My main ones are Enbrel, Methotrexate shots, Neurontin (sister drug of Lyrica), Flexeril, and pain pills as needed. I do exercise in water when I can, and right now I am getting fitted for a knee brace, going to Physical therapy for my neck. And recovering from 2 surgeries this past year. Oral and Sinus. As you know, what should take a month, takes 6 months. So, I am healed and will be starting my top plate and partial for my mouth. We are not sure why but my teeth got very bad when this disease hit. -
- CommentAuthorFancyPantsAndMe
- CommentTimeJun 19th 2009
I would suggest adding an organic fresh fruit smoothie to your morning and a green drink, made from green leafy vegetables in the early afternoon. These two things cannot hurt you in anyway and may actually help you to feel a bit better. I was in a car accident last Sept. and the green drinks are the only thing I have found that helped my chronic pain and inflammation. Contact me for the entire recipe or ask here, I'll be happy to write it out...it took 8 months before I found a solution..I can't imagine going through life with that kind of pain, forever.
I wish you luck.
Eat well, life well, be well.
Please read the 7 stages of Disease.
~Amy~ -
- CommentAuthormeccdj
- CommentTimeJun 22nd 2009
Castusrose
How did your dermo appointment go? What kind of treatment has he prescribed? -
- CommentAuthorcannvan
- CommentTimeJun 24th 2009
Hi Everyone:
Autoimmune thyroiditis, Sjogrens, CFS, Firbro and possibly Celiac Disease. We are realising we now have 3 generations of AD. Nancyg, like your comment on being your own best advocate, and double liked your advice on Dr.s who do NOT listen. My philosophy is, there is a dr on every corner, get another opinion/team player.
And nancyg, we better be type A personality, because anyone else would just fold to this disease, I am gonna fight and never give up :) I am not gonna worry about the next disease until it gets here, I am thinking positive...even in the face that it may be fruitless....my PA just told me, "you are a miracle sitting here...she said I could do some things now that I couldnt do (by her orders) 3 yrs ago, because she said, you have the HEART and the MIND to conquer, focus, and get on with your life". That made me feel so good, I will never be well, and someimes I have flareups, and only a miracle can stop AD...so while I wait, I think I will reach out and use whatever is out there to stay strong.
So glad to see this site...........very much needed.......Take care all, Carol -
- CommentAuthorvlwood
- CommentTimeJun 24th 2009
Reply to MECCDJ:
"VLWOOD glad to hear your mouth sores are starting to get better. How long have you been dealing with mouth sores? Several of my doctors have said the mouth sores could just go away eventually. My doctors do not want to put me on steriods at this time either. One of the problems I am having is dry and stinging eyes. Do you have that?"
-------------------------------------------------------------------------------------------
Sorry to take to long to respond. I didn't see your post till today.
My mouth sores began in May 2006, and I struggled to get diagnosed till August 2007. The oral pathologist prescribed steroids, but, for me, the treatment didn't help and was worse than the disease. I tapered myself off of the medication. After maybe another year the sores were almost gone, except for the small area where they began and still remain. And I still have a chronic acidic/metallic bad taste in my mouth
Yes, I've had dry red burning eyes even longer than I've had mouth sores. For me, Optive eyedrops at bedtime have helped. So has plain Vaseline out of a small tube.
Also had a crazy variety of skin lesions almost all over my body for about 5 years before the mouth sores started, as well as spots of bleeding under the skin. The skin lesions ate into my fingernails and toenails too. Couldn't get any of that correctly diagnosed either. It turns out that cicatricial ("mucous membrane") pemphigoid affects the skin in about 20% of cases. Let's hope that you will remain in the 80%.
Have also had years of numbness and tingling over much of my body, and at one time couldn't walk without watching my feet in order to see where they were. Couldn't get that diagnosed either, but I now know that it's probably autoimmune.
About a year ago I learned that I also have renal artery stenosis and kidney atrophy, and tried to explain to the cardiologist that it might be autoimmune, but he just stared at me blankly and changed the subject. The only treatment offered was surgery on the arteries. Studying up on that, via internet and print sources, I found that surgery doesn't always work and might cause an autoimmune flareup. First I'm trying a couple of alternatives: EDTA chelation to possibly help clear out the blood vessels, and EECP which is known to improve the collateral circulation.
Also developed a gallbladder problem about a year ago, which I've tried to explain to the doctors could also be autoimmune. Again the only treatment offered has been surgery, which sometimes works well and sometimes leaves patients worse then before. I'm looking for an alternative to that, too.
Your doctors seem to be more helpful than any I've found so far. Maybe they will be able to understand that from now on, if you get any new symptoms (let's hope you won't), it's necessary to consider that they could be autoimmune.
I hope my list of possibly autoimmune problems isn't too discouraging. How are you getting along? Best wishes for good progress! -
- CommentAuthorcactusrose
- CommentTimeJun 26th 2009
meccdj,
Went to local derm; he only spent about ten minutes with me, gave me a Kenalog injection and said see you in one month. I went to a 2nd derm out of town on june 23rd and he started me on 50mg of Dapsone a day with weekly bloodwork. If I do ok afte the first week, he will increase the dosage. Kenalog did not phase the lesions; they continue to present but still only in my mouth. How are you doing with the Dapsone; any improvement? Please let me know.
cactusrose -
- CommentAuthorAmyP
- CommentTimeJun 30th 2009
I never got relief from oral lesions using Kenalog. I take .6mg colchicine 2x/day, and have been on this treatment for 7 years. The med has little side effects and works wonders to virtually eliminate oral lesions. -
- CommentAuthorD'
- CommentTimeJul 2nd 2009 edited
It's rare to see someone with the same autoimmunes as my wife and me.
My wife has Behcet's Disease, found in the early 1990's and I have scleritis 1990's & neutropenia 1980.
I've just learned that mine "could" be linked to the water-supply on the Marine Corps Base Camp Lejeune in North Carolina from the 1970's. They found the drinking water to be contaminated with the industrial solvents trichloroethylene (TCE) and perchloroethylene (PCE). But have not related it to any disease.
My wife still has no idea how where or why she has Behcet's Disease, but the 2 of us is very odd. Both sides, parents brothers and sisters do not have any of these diseases. Our children have neutropenia scleritis and our grandchild has neutropenia. -
- CommentAuthorAmyP
- CommentTimeJul 2nd 2009
To D' -
Wow - I have Behcet's and scleritis. Behcet's diagnosed in 2001 and scleritis in 2008. I've never met anyone else with either! AI diseases do runon both sides of my family, back several generations. How is the scleritis being treated? I've been able to control all of the Behcet's symtpoms well witb the colchicine regimen, but I've not been so lucky in getting to a good place with the scleritis flare-ups. I am on Imuran and Cyclosporine for scleritis now.
I'd enjoy sharing experiences. I have another discussion started here for 'Ocular Inflammatory Diseases.' Thanks for posting! --AmyP -
- CommentAuthorD'
- CommentTimeJul 2nd 2009 edited
To AmyP
Well to start the scleritis is treated with Naproxen 375 mg 3 times a day for the inflammation and when I have flare-ups I use PredForte drops. I’m having so many flare-ups that they want to start with intravenous immunoglobulin therapy monthly but I'm holding off as long as I can before starting this, for now I’m staying with PredForte drops.
I ‘m being treated by doctor Stephen Foster see the link for his info.
http://www.mersi.us/aboutus/background.html
My wife is taking colchicine for her Behcet's and she also uses kenalog paste for her flare-ups. These seem to work great. The docs say my AI and her AI are not related in any way.
Have you had blood studies from a specialist to find your serology results? If not request it. -
- CommentAuthorAmyP
- CommentTimeJul 2nd 2009
Small world! I see Dr. Hinkle - Dr. Foster's associate a MERSI. These folks are they best and have saved my sanity and allowed me to continue to work and support my family. Blood studies galore at MERSI...they've tested me for everything! Dr Hinkle always tells me, "Don't worry, we'll leave you with enough blood to get home."
I had no luck with NSAIDs and pred forte for the scleritis - I felt like the scleritis was eating the drops! Also Naproxen and colchicine can't be taken together. The Imuran and Cyclosporine combo is working, but definitely taking a toll on my GI tract, and the fatigue is ridiculous. My biggest frustration, though, has been intermittent phases of awful eye pain that don't appear as visible inflammation to the Drs. Have you experienced this?
I cannot say enough good stuff about MERSI. The first docs I ever saw who didn't scratch their heads at my symptoms.
Also, I'm also not big on the intravenous treatment, but several other patients I've spoken with at MERSI have indicated they prefer it to the immunosuppresants. Less side effects and feeling better overall. Please keep me posted on your progress and challenges! -
- CommentAuthorcrstr
- CommentTimeJul 2nd 2009
I was first diagnosed with multifocal motor neuropathy in 2006 but it seems to have started closer to 2001. I have recently been diagnosed with possible CIDP. I was passed from hand specialist to hand specialist to neurosurgeon and, yes, had a spinal surgery which did nothing for the symptoms. I started with cramping and weakness in my right hand and, at this point, have the same plus cramping and weakness in my left leg and foot. I have had IVIG treatments which have definitly have helped. I am now on a "wait and see" watch which is what my insurance requires. I am thankful for my insurance as they have paid for most of my treatments. My symptoms are reoccuring now, however, and I will have to make a call to my neurologist in hopes that a new emg will show the weakness and more ivig trtmnts will be okayed.
I was first diagnosed at Mayo Clinic. The path that my body is taking is frightening and the future looks like it could be a whole lot different than I had imagined. -
- CommentAuthorD'
- CommentTimeJul 3rd 2009
Hey AmyP,
I do have eye pain but only with flare-ups, my eyes get so red and sore. But I can go 6 months without any problems and then bang, their back and clear up and come right back and this can last months. The neutropenia and AI are a bad combination, just my luck.
My most recent issues with AI is that I have real bad joint pain all over and this has been on and off for years but the last few months non stop.
Yes it's very weird that we have rare diseases and we're being treated from the same team and in Massachusetts.
I wonder how many people have the same disease and live in Massachusetts.
I am also glad to have found MERSI...
It's good to be able to talk with others about this.
Hang in there. -
- CommentAuthorvlwood
- CommentTimeJul 3rd 2009
Replying to crstr's post, "I was first diagnosed with multifocal motor neuropathy in 2006 but it seems to have started closer to 2001. I have recently been diagnosed with possible CIDP. I was passed from hand specialist to hand specialist to neurosurgeon and, yes, had a spinal surgery which did nothing for the symptoms. I started with cramping and weakness in my right hand and, at this point, have the same plus cramping and weakness in my left leg and foot. I have had IVIG treatments which have definitly have helped. I am now on a "wait and see" watch which is what my insurance requires. I am thankful for my insurance as they have paid for most of my treatments. My symptoms are reoccuring now, however, and I will have to make a call to my neurologist in hopes that a new emg will show the weakness and more ivig trtmnts will be okayed.
I was first diagnosed at Mayo Clinic. The path that my body is taking is frightening and the future looks like it could be a whole lot different than I had imagined."
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Your experience sounds so much like what happened to me back around 1990. Maybe my experience will encourage you somewhat. It even began in my right hand and later affected my left leg and foot, and I did have cramping and numbness, but not weakness. At the worst, I couldn't walk without watching my feet in order to know where they were. I also went through back surgery, which did nothing other than change a strong healthy back into a damaged painful back. Despite going to several neurologists and others, for a total of 18 doctors over several years, I got no diagnosis and almost no treatment other than the back surgery.
The good news is, I got better, despite the lack of medical help. True, I have permanent (19 years now) numbness over the left side of my body, but no pain or weakness. Numbness I can live with. The bad news is that, starting around 1999, I got crazy skin lesions over most of my body for about 5 years, made the rounds of dermatologists and again got no help.
I didn't know how lucky I was to finally get mouth sores! That's when I traveled out of state to see an oral pathologist who actually did a biopsy and found that it was an autoimmune disease (mucous membrane/cicatricial pemphigoid). Although she gave me almost no further information, I then studied up on autoimmune diseases and realized that all the things that had been happening to me were probably autoimmune.
The mouth sores eventually got about 95% better without treatment, only to be followed later by weeks of severe abdominal pain, probably gallbladder, maybe autoimmune, too. That also cleared up about 95%.
At some point, there was a similar temporary problem with the thyroid. Doctors wanted to remove my thyroid, but I didn't allow that. Like the other flareups, it got better on its own, and I'm awfully glad I'm not having to live without a thyroid gland.
I guess I never know when or what the next flare will be. But they can get better, and that's the encouraging part, such as it is.
Did the Mayo Clinic check your B-12 levels? Probably they would do that. I guess you know that B-12 deficiency can be autoimmune and can cause severe neuro symptoms.
I hope so much that you'll get better. -
- CommentAuthormsnova
- CommentTimeJul 7th 2009
Hello,
I have mixed connective tissue disease and fibromyalgia.
T -
- CommentAuthorTatiana
- CommentTimeAug 26th 2009
Hello, i have working diagnosis of "Autoimmune Inflammatory Peritonitis". Has anybody heard of it? if u have it what is your protocol? Any good refferals for doctors or clinics? Also looking for the stories about long remissions and complete cure from any autoimmune conditions. Anybody out there? What was your way out of it? -
- CommentAuthorCafeTeOMe
- CommentTimeAug 27th 2009
Hi! I"m glad to have found this site!
I have Addison's Disease, hypothyroidism, pernicious anemia, vitiligo, fibromyalgia and at one point I had sarcoidosis. The sarcoidosis burned itself out after a year or so. The sarcoid gave me very intense arthritis-like pain. I also had a couple erythema nodosum nodules on my legs. No lung involvement, thankfully!
Even with all these "issues" I live a pretty normal life. Sure, I get tired more easily and don't have the stamina that I used to have (hey! I'm 48!!) but I manage pretty well for myself. I really don't allow my diseases dictate what I can or cannot do. I'm pretty well managed by my endocrinologist. Like most people on this board, I believe that self education is KEY to your well being. Question drugs, treatments, new symptoms, etc.
Just my $.02!
Sharon -
- CommentAuthorBambi
- CommentTimeSep 2nd 2009
Hi
I was diagnosed with a rare autoimmune disease called Vogt-Koyanagi-Harada (VKH) by my ophthalmologists.I am not sure if I should be seeing other doctors besides my ophthalmologists.I am on prednisone(tappering off thank god) and methotrextate.My doctor said if I didn't start treatment I would lose my vision. I do believe that I may have uvietis but not sure of the VKH since I there is not alot of information out there about it.
Bambi