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1. • CommentAuthoraarda
   • CommentTimeApr 22nd 2009 edited

    # 1Report Post
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2. • CommentAuthorcammy
   • CommentTimeMay 5th 2009

    # 2Report Post
   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
3. • CommentAuthorvlwood
   • CommentTimeMay 6th 2009

    # 3Report Post
   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!
4. • CommentAuthorlaltce
   • CommentTimeJul 10th 2009

    # 4Report Post
   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.
5. • CommentAuthorribs69g
   • CommentTimeJul 26th 2009

    # 5Report Post
   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.
6. • CommentAuthorvlwood
   • CommentTimeJul 26th 2009

    # 6Report Post
   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!
7. • CommentAuthoryana2282
   • CommentTimeAug 17th 2009

    # 7Report Post
   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?
8. • CommentAuthorTatiana
   • CommentTimeAug 26th 2009

    # 8Report Post
   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.
9. • CommentAuthorgsgirl
   • CommentTimeOct 3rd 2009

    # 9Report Post
   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.
10. • CommentAuthoralcyon73
    • CommentTimeOct 3rd 2009

     # 10Report Post
    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