I am so disgusted with the medical establishment right now.
It's been 3 years of suffering and being diagnosed with this mysterious polyneuropathy/connective tissue disease to which no treatable cause has been found. I've been to Columbia and Weil Cornell and had "excellent" work ups, but all they can tell me is that I have confirmed neurological damage and offer meds to mask the symptoms.
I found some information on line provided by Mass General by Dr. Anne Oaklander who specializes in my type of neuropathy. She had a list of blood work she orders for people with my disease. I asked my local neuro if he would run them. I just got the results back and it turns out I have high antibodies for actin from the smooth musc AB IGG. This is associated with autoimmune hepatitis in most cases of primary autoimmune hep, autoimmune cholangitis, or biliary cirrhosis. I have felt that something was wrong with my liver for YEARS and no one would do more than run regular liver tests. I even went to an infectious disease doc and asked to be checked for whatever liver diseases he could think of. I don't even know where to turn with this. I have been to 4 rheumatologist of which one said "maybe sjogrens". I am dumbfounded and don't even know who to talk to, or what help to get. Not to mention that my children and I developed symptoms around the same time frame.

Wow... that is amazing. My MIL had both valley fever, and then
later, autoimmune hepatitis. She lived to be 92 and remained fairly active, considering, but had bouts of severe fatigue over 40 yrs. When the hepatitis progressed she did turn yellow (jaundice) but she was about 80 then.

You might try some taurine, which helps with bile flow and gall bladder symptoms. Start at 1000mg a day, and may go up to 2000. This is simple and no side effects. Ask your doctor about milk thistle also...as it is often used for liver problems.

Taurine works by binding to cholesterol which is passed into the bile and thru the gall bladder into the GI tract for elimination there via the stools. Taurine helps the bile flow better, so it doesn't irritate the passages, and cause crystallization and inflammation.

I bet autoimmune liver disease is more common than diagnosed.

Thanks Mrs D,
I've been taking milk thistle for a year now and find that it doesn't help. I will definitely look into the taurine. I just dont see how none of the doctors would have checked me for this given how severe my neuropathy and dysautonomia is. From what I'm researching, I'm finding that doctors say it absolutely must be treated with steroids to chemo drugs. I am freaking out and also happen to be in a terrible flare, so getting these results today is hard to take after 3 bad nights of autonomic problems and shooting pains. I'm just so sad. Now I have to try to find a hematologist who specializes in this seeing as how I've been tossed around and this was misses by the "best".

My mother in law typically would not discuss health issues much...so I don't know what if any treatment she had-- all she would tell us was that the only thing she was taking was Theragran M per doctor's suggestion
(an old therapeutic vitamin--OTC).

She just told us she woke up that morning-- yellow.

Perhaps if a person doesn't show jaundice, doctors don't delve into autoimmune hepatitis or other liver disorders?

I'd go to a liver specialist if I were you.

Healthgirl, I share your frustration.

I agree with mrsD that seeing a liver specialist is a good plan.

This information about workup and possible management options for autoimmune hepatitis might help you Autoimmune Hepatitis Workup: Approach Considerations, Autoantibody Assays, Serum Proteins and Immunoglobulins.

@Healthgirl,

Did you get checked for Hep C? Had to ask, was a big shock to me when I was diagnosed....



Good news for coffee drinkers:

Coffee beneficial for liver

Well, as far as the cause... that hasn't been determined yet. Just going on test results that point to a systemic immune mediated problem. I went to a gastro in Friday and she is running some tests for parasites, and more blood work, so we'll see if she can help. As far as what happened to all of us, I am waiting for my genetic work up to be done at Columbia. The results will probably be back in a month. There are definitely genetic predispositions to autoimmune liver stuff. We might never know the trigger, but hopefully will find a treatment.


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I'm disgusted with the medical establishment right there with you! Well, I hope this ultimately places you on a better path to finding some treatment for you and your children. I know what it's like trying to find the cause and coming up short. I hope that change for you now.

I see that some of you are from the New York City area. Did you have any 9/11 World Trade Center exposures back in 2001-2002, which would include north brooklyn, western queens, staten island, eastern new jersey as well as manhattan? Studies are showing connections between world trade center exposures in 2001-2002 and peripheral neuropathy, autoimmune illnesses and liver and kidney problems. something you might want to look into if you were exposed.