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- CommentAuthoraarda
- CommentTimeApr 22nd 2009 edited
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- CommentAuthorcammy
- CommentTimeMay 5th 2009
Hello, I was so happy to find this site, I hope i may find some answers to my questions. My main questions where do i find more information, get help etc.......... Here is my story............ I am a 45 year old female, I was given a diagnosis 3 weeks ago from a liver biopsy. Autoimmune hepatitis (chronic), Etiology undetermined, Marked activity with established cirrhosis. Report states:There is severe periportal interface hepatitis, score 4/4. Confluent necrosis is focal score 1/6. Focal spotty, lytic necrosis, apoptosis and inflammation is seen. score 2/4. Portal inflammation is moderate in all portal areas score 2/4. Portal inflammation consists mainly of lymphocytes with scattered eosinophils and rare plasma cell. Also foci of acute inflammation are seen. The hepatocytes show ballooning degeneration with a few Mallory bodies. A prussian blue stain in the presence of adequate control is neg for stainable iron. Total HAI score is 9/18. The trichrome stain shows marked increase in fibrosis, definite cirrhosis, modified staging score 6/6. The pt. SMA results is very high.
My treatment? Predisone daily for one month and referral to hosiptal for liver transplant.
One month before this I was at endocopy center. There findings was Severe GERD of the esophagus, Grade III reflux esophagitis of distal esophagus. Hiatal Hernia, Duo Ulcer/ Gray white base blub, stated aprox 12 ulcers and tumor in stomach area.
Why did I go to doctor in first place? Spitting up blood, coughing up blood or I would just be talking and people would say you got blood coming out of mouth running down chin........ or on your theeth. Up untill 2001 i was healthy, never sick. then in 2002 i had several cases of pneumonia 2 to 3 times a year abdomal pain. To make a long story short PET Scan revealed mass in in left upper lobe with nodal extension to lymph nodes in the 4L, 4R and subcarinal regions. Mediastinoscooy revealed several lymoh nodes in the 4R region which was biopsied and showed no evidence of malignancy a left thoracotomy was performed with wedge resection of the left upper lobe nodule and an apical bleb, pathology revealed caseous granulomatous inflammation consistent with TB. After all testing was done TB was neg. So they said large gran was consistent for histoplasmosis. All test and growths on histo came back neg. But decided sence i had visited mississippi a few months eariler then I prob had histo. No other test was ran after that.
MY question is all this stuff connected. Where do i find a doctor, clinic, something or someone that is willing to sit down look at all my records i have copies of most all of them. Someone to look at why 7 years ago i was perfectly healthy. Now i have migranes, muscle spasams,cramps, to the point of falling down. or hands cramping up. I stay tired all the time. I bleed for no reason, from various parts i might add. I have a bad rash on face at times that looks like skin peeling off. Now they tell me my immune system is fighting my liver and want me to get a new liver. Should someone not find out what destroyed my good liver? Would this happen to me again if I got a liver transplant:?
Ok enought thank you all for listening. I would accept any advice,help just point me in the right direction. My father grandfather, uncles and several aunts all died of cancer. various forms from lung, breast, lymph, to brain. I have two daughters and a 4 week old grandson. If I can't be helped then i want them to have all the information they can so they will know the family medical history and won't end up with something and not know what..............
Thanks again
Cammy -
- CommentAuthorvlwood
- CommentTimeMay 6th 2009
If autoimmune hepatitis is what you have, then what damaged your liver is a malfunctioning immune system. I don't know whether the same thing would happen to a transplanted liver, but you may not have any choice other than to try it. You should be able to ask your current doctors that question.
It sounds as if you're getting a lot of medical attention. But if you want to check with other doctors, Johns Hopkins has been doing some studies on autoimmunity, and the Mayo Clinic in Rochester seems to be good, and, from what I've read, some of the other major medical centers are probably good, too. I have no personal experience (yet) with any of them.
I hope you find the answers you need! -
- CommentAuthorlaltce
- CommentTimeJul 10th 2009
I was diagnosed 11 years ago with a form of scleroderma, Morphea. My body is covered from my neck down to my toes. I wanted folks to know who are in my shoes that I have been and still being treated with a treatment called Photopheresis. This treatment has worked so well that I am in the February Archives of dermatology (JAMA & Archives Journals)magazine.
I had already been through the normal treatments creams,prednisone, cellcept all kinds of treatments. Nothing worked. The treatment has softened my skin,some areas look like I never had a problem or still do. Changed the color of my skin to a more natural look, helped me with the fatigue that comes with this diease. Please don't let your doctors stay within the box of treatments. Have them look else where. Please have them refer to this magazine. Since I had offered to participate in a "Grand Round" other doctors are using this treatment. They have now seen it first hand. -
- CommentAuthorribs69g
- CommentTimeJul 26th 2009
Hi,
My name I have joined this forum because I have a friend who was just recently diagnosed with an autoimmune disease. They have not been able to pinpoint the exact disease. She has been suffering with some disease for quite some time now. Very healthy women. Hispanic in her 30, and was very high energy. Their initial diagnosis was some form of pneumonia, but the steroids they gave her were not working, so she was hospitalized. They started to treat her for Valley Fever, but the tests came back negative. She has night sweats, and has extreme fatigue when she walks a certain distance. It is painful for her to walk and when her husband tries to pick her up she feels the same pain. Her mobility is getting worst and worst. We reside in AZ and there is a shortage of Rheumatologist here. Are there any suggestions. All her symptoms point to RA, however recent blood work suggested there were some abnormalities in the blood. ANA levels were pretty high (normal with autoimmune diseases), and her liver came back abnormal. She is currently on prednisone, but I have a feeling it is not having any kind of affect on her. Has anybody suffered any of those kinds of symptoms? I really want to try and see if I can get some information.
I also want to know while we wait for the doctor to find out which disease it is, what can we do in the mean time to minimize her inflammation, and her joint pain? The only thing that she finds relief from is by swimming in her pool. She said that nothing hurts, and her body feels really light. I do realize that this type of illness can only be treated to help a person lead a normal life, so we are trying to find out the best techniques or life changes that have impacted a persons life in copying with the symptoms. Any advice and tips are greatly appreciated. -
- CommentAuthorvlwood
- CommentTimeJul 26th 2009
Since you're in AZ and maybe interested in finding a rheumatologist, you might want to check with the Mayo Clinic in Scottsdale if you haven't already done so. Good luck! -
- CommentAuthoryana2282
- CommentTimeAug 17th 2009
My niece who is 5 years old was diagnosed with juvenile rheumatoid arthritis a year ago. We just started her on methotrexate and it is scary how many side effects it might have. Does anyone have anything they can share in regards to this? -
- CommentAuthorTatiana
- CommentTimeAug 26th 2009
Hi I m new to the forum. Anybody who had any success and long remission or total cure please respond!!!. I m looking 4 help and anybody's input is appreciated. Please describe your treatment and who is your doctor. At this point Im ready to go anywhere, any clinic to see any doctor who cares. i live in Pittsburgh, PA and in spite of the good reputation for Pgh clinics I've had rather frustrating experience. it seems that doctors here r not interested to diagnose u or put any effort in treating u, just masking the symptoms and bounce u around. I m considering going to either Mayo clinic, John Hopkins or Clevelend clinic. Anybody had any experience with these places? Who would u recommend? Alternative doctors and supplements r also a possibility.
i have working diagnosis of autoimmune inflammatory peritonitis. Anybody heard of that? for a 1 1/2 i had diagnosis of peritoneal methoselioma, but eventually it was ruled out by my oncologist because I responded to steroid treatment. My oncologist z wonderful but it doesn't seem that i m his case. Now I feel in "no man's land" as nobody else cares. -
- CommentAuthorgsgirl
- CommentTimeOct 3rd 2009
Ok. I am new and doing some research. Had a positive ANA and was told I have Auto Immune but they don't knwo which one because my I don't have enough symptoms. I work on projects that take me in the hospital Er areas often. I am concerns if I can catch sicknesses easier now? Should I get the flu shot this year or will my body not be able to handle the shot and I'll get the flu for sure. I am confused about this new illness and need to research what life hanges I need to make to assure I dont put myself at risk. I have alot of people depending on my pay to have s roof over their head. This economy has cause allt o lose their jobs excpet me and I am supporting three families and praying things will get better. I can not get sick. Though I have been up all night with cold like symptom but no fever. -
- CommentAuthoralcyon73
- CommentTimeOct 3rd 2009
gsgirl
In autoimmunity the immune system is overactive and attacks your own body. If your autoimmunity is untreated, you should not worry any more than usual about infectious disease. Yes, you can take the flu vaccine. It won't give you the flu.
If you are on prednisone or immunosuppressants, to treat your autoimmunity, then you have a weakened immune system and you definitely DO have to be more careful of infectious disease, but the flu vaccine is still safe and is probably a good idea in that case.
Talk to your doctor about it.
Glen -
- CommentAuthorcstaz18@aol.com
- CommentTimeJan 17th 2010
My name is Carol and I was happy to find a site that was specific to Auto Immune diseases since I have been diagnosed with a few. In the last few years I have been diagnosed with/being treated for Lupus, Ankylosing Spondylitis, Rheumatoid Arthritis, Meniere's Disease and mild COPD. Within the last year I have experienced numbness in lower portion of face and/or inflamation in the nerves in the neck. I have an EMG scheduled this week however the Neurologist has not yet determined what the cause/diagnosis may be...any comments would be most appreciated. Thank you -
- CommentAuthoralcyon73
- CommentTimeJan 17th 2010 edited
Carol
Lupus can cause neuropathy, but it is usually in the hands and/or feet. You have so many things going on medically that one hesitates to rule out anything. Hopefully the doctors can rule out all of the odd possibilities for you after the test results come back.
Glen -
- CommentAuthorcstaz18@aol.com
- CommentTimeJan 17th 2010
Thank you Glen -
- CommentAuthorJennifer
- CommentTimeFeb 27th 2010
I found this site after looking up the symptoms Ive been having. Went to see dermatologist about one, she told me to see an allergist. My symptoms are growing monthly so it has me concern but cant seem to find time to get to the doctor Im afraid I might have an autoimmune disease. All my symptoms Ive looked up point to an issue. Im a 33 yr old married women with one son. Had surgery in early twenties to correct very bad bunions right ovary and tumor removed at 16 tonsils removed due to huge holes and rocks in mid twenties hysterectomy last year in July because of fibroids and andometreosis suffered from severe endemetriosis before I had my son at 19. Other than the previous list Ive been very active and have always had energy from early morning to late nights. Now I can barely get up in the mornings and go to bed as soon as Im home. The following is a list
1 (recently happening more and more) Red flushing on chest and neck sometimes blotchy sometimes looks like Im sunburned thought it was alcohol related at some point then thought chocolate then maybe dust emotional but one evening I was just watching tv and felt the wierd feeling and checked in the mirror sure enough
2 I seem to have "restless legs" at night have to move and stretch almost painful. This has gone on for years but lately its almost every night. One evening I noticed that my legs were actually bright red like I was sunburned and hot to the touch but I was not. My husband notices that legs sometimes are very hot when he climbs in bed. I dont notice
3 My knees have always crackled and popped but lately my right knee seems to seriously be injured if I make a wrong move. So I went to the doctor and found I have a disorder in the cartilage. In the mornings my knees are always sore and red?
4 All the joints in my hands hurt, wrists, knees (always have) shoulders, feet, ankles all hurt especially in the morning Sometimes really bad at night *Arthritis ?
5 Ill sometimes get an odd feeling in my hands during the day like a burning, knawing
6 My toes actually turn purple and just last night my right hand (palm and few fingers) turned purple then an odd white color. When I showed my husband he noticed a redddish/purple web like rash? from my hand up to elbow. I get this web like rash all on my legs sometimes) *Raynouds and livedo reticulus ?
7 Loosing my hair and its brittle
8 5 years ago I had a huge rash all over my body and was diagnosed with pityriasis rosea and was given medicine and it went away. But I have something that looks almost similar to in on my sides (near chest), on sides of my lower abdomen, and get it on my scalp. I noticed one time while blow drying my thinning hair I had red lacy like marks all over my scalp. This was during a time when I was treating what I thought was dandruff with Head and Shoulders, went to an after care dr. and he gave me medication for the scalp. I looked it up on line and treated psoriasis but makes my hair even more brittle
8 little petechiae like dots on my abdomen that dont go away might be growing
9 My nails look pale purple these days
10 Extremely sensitive to the cold. My husband and son will be comfortable at home and Ill be shivering to the point my teeth chatter
11 love to lay out in the sun but the rash on my sides and stomach get worse and it actually shows up on other areas like arms and legs sometimes face
12 The oddest as if the past 11 arent sometimes when I eat food small pieces will get stuck in my throat where I cant swollow, not even water. It will make a gurgling sound and I have to wait it out or try to make myself throw up doesnt seem to work though. All the time its stuck I can breathe thank goodness!
13 never had allergies but when I was in the hospital after the hysterectomy they gave me morphine that created red like marks and hives from the IV area up my arm (had morphine a few times in the past surgeries with no problems) had a catscan contrast that (only 1cc got into my body because my vein collapsed) and I broke out in hives - doctor said I was allergic to Iodine. Ive had Iodine all over my body from cuts to surgeries? started taking an allergy pill every day because of the next issue
14 Went to see an ENT because I had a full feeling in my left ear that made me want to keep my head tilted to the left He said there was no infection but my ear drum and small bones in ear were gone. Didnt surprise me much because I had issues with my ears as a child (need to keep tubes in ears due to defective eustachion tubes) Dr told me my full feeling is allergies?
I know theres more Im probably forgetting but I do want to forget. Its very embarrsing to have these issues, which I think it's what is causing me to put off the doctor visits. Cant imagine myself telling the doctor all of the above. I would truly be afraid of an odd look from him
Please help me pinpoint what problem is. Im tired, I need help
Thank you for your time, I appreciate all the feedback
Jen -
- CommentAuthoralcyon73
- CommentTimeFeb 27th 2010
Jen
Don't be shy when it comes to seeing a doctor.
It is not unusual for people in your position to have a bunch of symptoms.
On a bad day I have sore joints in my feet, ankles, knees, wrists and hands, raynaud's , muscle weakness and pain, skin ulcers, gangrene, skin lesions, a rash, mottled skin, vertigo, and neuropathic pain with various neuropathic sensory effects, to name a few. ..... and I'm not the least bit shy about telling my doctor about it.... but to get diagnosed I had to tell my doctor about it.
Please see a doctor.
Glen -
- CommentAuthorJennifer
- CommentTimeFeb 28th 2010
Glen, thank you. Im the typical vain woman that has too much pride so it has kept me from talking to the doctors about everything and yet Im missing too much work and am only getting worse. How were you able to find the "right" doctor and open up? Was it already dibilitating, or were you able to catch everything early? -
- CommentAuthoralcyon73
- CommentTimeFeb 28th 2010 edited
Jen
My autoimmune disorder hit me hard all at once. The symptoms were profound.
When my autoimmune disorder (cryoglobulinemia) started up, I thought I had arthritis and in typical male fashion I decided to just "live with it" and I did not go to the doctor right away. I very quickly became extremely ill with vasculitis and wound up in the hospital with a potentially life threatening situation.
The doctors did not know what was wrong with me and at first they thought I had an infection of some kind, which they soon ruled out. I was talking with one of the doctors at the hospital and I suggested that maybe I had an immune system problem and the doctor said he would bring in a rheumatologist to have a look at me. Sure enough the rheumatologist was able to diagnose me right away and I started recovering after a big dose of steroids. I'm still seeing that same rheumatologist.
Glen -
- CommentAuthorCheryl D.K.
- CommentTimeMay 13th 2010
Hello, My name is Cheryl. Im a 44yr. old African American Woman.
I was dx. with Lupus in 2003,and high blood pressure in 2008.I had symptoms way before then there was alot of misdx'ing. I thought I was a hyperchondriac for years.Until I spoke with my mother who also, has Lupus and she suggested I go in for specific test through my primary.
My mother has: sys. and dis. lupus, thyroidism, cataracts, rheumatiod and high blood pressure. My sister has throidism and Graves Disease.
My symptoms on a daily are aches, pains, fatigue, fevers, poor circulation in hands and feet. I it believe its even affected my memory.
Im not on alot of meds. I take 1 for high blood pressure,an anti-depressant and a pain pill. There have been moments with steroids (7 days about once a year where my body wont fight off infections).
I really am glad to finally find a spot to speak with others. Im hoping this can be informational for us all. -
- CommentAuthorteaching2nd
- CommentTimeJul 19th 2010
Hello,
My name is Kim. I am trying to find information for my older sister. She has been battling the problem she has now for the past 4 years. At first she thought it was an allergy and so she went to an allergist the 2nd year.
It started getting worse last year. It started with a red rash on her chest. It almost looks like she has a real bad sunburn. It is raised. It then progressed to her scalp, fore head and by her nose. The face area isn't as prominent as her chest. Next it is on her breasts and down her upper arms. She then developed "buise spots" but hadn't bumped into anything. The bruises were very hard like she had been working out and were very, very tender and sore. Some of those areas are not becoming blistered like a sunburn and the skin is falling off.
Whatever she has is now also on her upper thighs and lower stomach area.
She has been to numerous doctors. She has had many blood tests and skin biopsys. She had one possible diagnosis a couple of weeks ago, but he wouldn't confirm until the bloodwork came back. He thought she might have dermatomyositis. The bloodwork revealed she didn't. He saw she was in agony and referred her to another doctor. This doctor to 4 skin biopsies. She hasn't received the results, but my heart is aching knowing we can't find out what is wrong.
The rash itches like crazy, but they won't prescribe anything because they want to find the cause which I understand. But in the meantime she is in complete agony with the pain and itching from the rash, the bruising and it continuuing to attack her body.
The last doctor said it is probably an autoimmune disease and not an allergy, but the doctor is unsure as to what disease.
I can't believe that this can go on as long as it has without some relief for my sister.
Any ideas from anyone? I've read the posts to this discussion group and google whatever autoimmune disease has been mentioned, but so far none have been the symptoms my sister has. Is there a list somewhere with all the autoimmune diseases listed that I can look up each disease? I am at a loss and feel helpless. My sister was there for me 14 years ago when I had cancer and I want to help her out now, but feel helpless and useless to her.
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- CommentAuthorlisamann
- CommentTimeJul 25th 2010
I have had necrobiosis lipoidica for about 10 years. It is a relatively rare and incurable skin disease that is usually related to diabetes (although I'm not diabetic). I was told by my first doctor that it was an auto-immune disease, but since then I have not seen or heard it called one anywhere else. Does anyone know if necrobiosis lipoidica is an auto-immune disease? My paternal grandmother died of lupus and other members of my father's family have had various auto-immune disorders...
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