[QUOTE=Emily’s_mom]Emily’s dr just called. There is inflammation along her spine from the lower lumbar down. She said this is common with CIDP. But she also wants to test for Charcot Marie Tooth. I researched CMT and I really don’t think that Emily has that. She did have the symptoms (same as GBS/CIDP) last December but they went away with the IVIG. My understanding is that CMT is progressive & IVIG wouldn’t make it better.
Is it possible to have no protein in her spinal fluid but still have inflammation from CIDP or GBS in her spine?
My thinking is that we were told that the 1st areas affected by GBS/CIDP are the last to get healed. Maybe the inflammation started her spine, she had foot & leg pain first, and that it will just take more time for the spine to heal as well.
I’ve gone from being hopeful & optimistic to being scared & nervous.
I have had CIDP for about 4yrs.TheDrs did not know what I had and I had to di MYself .I did this by research on the internet.
I recall that spinal caps are not always reliable indicatore .I also recall thatIf Immune globulin brings relief you have CIDP PERIOD.You must take 5 days consecutive IV for a proper test.Good luck.