CFS level…

I am assuming that by your CFS level you are referring to your protein level in your spinal fluid after a spinal tap or lumbar puncture? If that is the case, then your protein level is very elevated & you probably do have CIDP. CIDP is usually dx by three things; elevated protein level in the spinal fluid, lack of relexes, & a sural nerve biopsy, which you will get of you go to the Mayo Clinic. They will also give you a myriad of tests to rule out everything under the sun (spinal nerve root biopsy, bone marrow biopsy, lip biopsy, CT Scans, MRIs, x-rays, etc…) Been there, done all that.

But just because IVIG doesn’t work doesn’t mean that you have ALS. For 40% of those with CIDP, IVIG doesn’t work at all, or not for awhile. I hate to suggest it, but I think they should try a few infusions of solumedrol (steroids), as that will probably tell you if you have CIDP. My neuro at the U of MN said that is now the first choice of treament for CIDP. In the beginning, when I was at my worst, & IVIG & PP did nothing to help me, steroids would give me a little something back. Also, there are many other treatments other than IVIG that can be tried. Please keep posting, & let us know how things go for you…
Blessings, Pam