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

Oh yes, I asked for all the liver blood work early in the game, because I was convinced my liver was not working properly. Everything came up negative. I am so disappointed that I had to figure this out by myself and it took 3 years. Now I have to find a doctor who knows how to deal with it. My neurologist doesn't know what to do, so I'll probably end up back at Columbia, but with a new rheumatologist.

I find that coffee helps me by being a short acting vasoconstrictor which helps with my autonomic symptoms for a short time. It is a very important drug in my arsenal against this madness. Good to know now that since I do indeed have liver problems that it shouldn't hurt it

Yes, do try to see a liver specialist. I have a friend with biliary cirrhosis and it is not a trivial disorder. Your liver labs alone may not mean you have one of the disorders but you should at least have it ruled out.

I'm so happy that you found the cause of your SFN. What are your thoughts about your kid's neuropathy symptoms? Especially, what your feelings about your family's environmental triggers?