Hi Liza Jane. I believe this is my first time responding to one of your posts. Just want to say thanks for all the info you've suplied in your stickies. They've been immensely helpful.

In regards to IVIG and insurance in your post, I've just gone through the same process with Dr. King Engel in LA. There are multiple hoops to jump through. The blood work was over fifty lines on my insurance form ($10,000+ too), and, at least for me, they require a lumbar puncture and a muscle biopsy, and then any coverage is not a problem.

But be careful. For me, after getting the LP, my nerve pain has increased, coupled with a constant dizziness and muscle spasms and numbness on my right side. My neuropathy started as a result of a surgery, so after the LP I passed on getting the muscle biopsy. If you can avoid both of these tests and get IVIg infusions (if you indeed have immune markers from your blood work), that would be the way to go.

Good luck.