Here's where I struggle too... I have an appointment on March 26th with the head of Immunology at University of Michigan (funny because I went to MSU!). Anyway, should I be seeing a neurologist there instead?

Thanks again. I reread these now that I have more time, and there is some great information. I appreciate the explanation between the antibodies, and also the comment that SFN can cause wide-spread pain, not just in the hands and feet.

I am scared to try any immunosuppresent drugs, are those like chemo?

And last, yes, "I wasn't impressed" either with that second doc. I was so excited to see her too. I wonder if she just didn't want to take on a basket case? She was soooo nice in the hospital when she begged me to come see her!

These are always hard decisions. Whatever you decide, don't second guess yourself.

Also, I would recommend having your blood tested by Igenex lab. It is a lab that specializes in Lyme. My docs don't give it much mind, but, at least it can rule OUT Lyme. Mine admit I could have a post lyme issue...that is now an autoimmune disease. I always wonder when folks have GB like profiles. I had Lyme, and they caught it right away, but my labs are negative everywhere but by Igenex. Liza Jane may have a link to the lab on here, I don't know.

I am not on long term antibiotics....they did me no good either.

I do think IVIG takes a while to work for some people and progress is not getting worse. I too am debating adding some 'chemo' like drug, which I KNOW won't sit well with me. Just really hard decisions....I understand.

--have been developed for blood cancers, which in many cases are the result of the immune/immunoglobulin system gone haywire and over producing rogue antiboides, and yes, they have been tried, in differeing dosages, for other atuoimmune problems as well. There are some well-documented side effects, but the decision whether or not to try them is very individual to the case.

If you are going to a teaching hospital, it might be a good idea to see a nuero as well as a rheumie, but not just any one; it shuld be a neuro who specializes in neuromuscular disorders and/or neuropathy. (Too many of them emphasize the central nervous system--strokes, MS, seizures--and may be unfamiliar with autoimmune issues and such.)

It soes sound as if that original neurologist at least has a clue--those anti-neuronal antibody tests are not standard procedure from most neuros (they are rather specialized).

Thanks. Ironically, my sister has been diagnosed with Lyme, and so has my Mom. Mine has always come back negative by the normal Western Blot, but my sister believes so much in Ignex, that she sent me the pack and even offered to pay for it. I pulled the pack out yesterday, and finally after six months, decided to get the test done. I plan on having it done today!! I want to have the results done by the time of my UofM appointment on the 26th of March.

My first neurologist is great, I really love her. The only problem is, she is the one referring me out (ha ha). She is good enough to know she is over her head. She feels like since the IVIG didn't work, she is out of options. I think I will do some research on a good neurologist at UofM too. Maybe the immunologist there will have his own ideas, but I can always cancel the appointment then. Thanks for the insight on what to look for. Yes, I've seen two other neurologists, and once the EMG, Brain wave thingy, and brain MRI come back normal, they seem to think sometimes it is "stress." I wasted two years on a bad neurologist because I used to take their word as God.

Thanks again. I am so happy to have found some people I can talk to about this stuff. My family basically thinks I am nuts. While my husband is supportive in helping out when I can't around the house, he is not as supportive about helping me solve this riddle. He thinks I talk about it too much. At least now, I have an outlet and some answers.

My hemotologist mentioned that maybe the IVIG was working because I was standing in front of him, and not limping or using a walker, etc. I took that into consideration, but then freaked when I got the one automimmute test back that suggested thrombosis. Then I got in a big argument with them, which is a long story, but the receptionist assused me of picking up my pain meds and taking them to another pharmacy and coming back for more, when I went to pick them up for the first time! I cancelled all the appointments with them, and never went back. It hurt really bad because it is already hard, but I know the difference between dependence and addiction, and they were accusing me a lier. Anyway, if I do start IVIG again, I will have to find another hemotologist to treat me