I certainly understand your frustration...it was 12 YEARS before I had a proper diagnosis for my collection of terrifying symptoms. All my doctors recognized the seriousness of my conditions (that tests showed positive), but they had no idea what was causing everything, so no clue as how to treat me.

I felt the same way you do...wanting to keep trying anything/everything until an answer could be found. So that being said, if it were me, I would pursue the biopsy. You & I have discussed this before...and how the biopsy CAN show damage that and MRI would not.

I would also try the Cellcept. I had short term success with that helping nerve pain/symptoms, but I did have to stop due to an infection. It was NOT from the medication. I had a large hematoma form from my blood thinner injections. It got so big (grapefruit size) that the mass became infected (which would have likely happened even for someone not on an immune suppressor). So I had to stop the Cellcept...but I did have 3 months of reduced symptoms before the hematoma got infected. It is certainly worth a try for you. Yes, you can get sick from it ,but you're sick because you're NOT being treated, so maybe you should roll the dice and try. If things start to get worse ,then you can stop and there are remedies for it (like IVIG to quickly boost the immune system---if you get seriously sick from a weakened immune system).

The IVIG trial you had wasn't long enough to show whether it would work. There is NO documentation that says only 2 infusions is the normal course of treatment. The typical course is at least 6 months. It takes time to reorganize the immune system...not something that can happen in 2 months. So another opinion on IVIG would be worth while at this point...someone experienced in prescribing IVIG for immune based neuropathy. Do you know how much they were giving you?? Neuropathy dosing is 2 grams/kilogram of weight. Is this what you were getting? if not, then this is also a factor in your brief trial of IVIG.

Have you had any success with symptomatic relief...like Neurontin, Lyrica, or antidepressants used for nerve pain? What about pain meds? I can't remember all your history, so not sure what you've tried and haven't tried.

Try to stay positive. I know it's hard, but attitude is very important in this fight. Frankly, it's the only reason I'm still here today, I believe.