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.