This has been going on for 11 yrs now, and I forget sometimes what the timeline results have been.
I started with numbness and tingling in my feet and having numb lips 11 yrs go.
As the years progressed I developed more symptoms throughout my body, and was to 6-7 neurologists.
The usual testing of brain mris and EMGs were done along the way.
MS was ruled out as my brain scans were neg,
I would say within the past 3 yrs, I was seen at The Undiagnosed Disease center which is in Bethesda Maryland and part of the NIH.
After 5 days of extensive testing, more MRIs,spinal taps, EMGs, bloodwork etc, it was them that gave me the CIDP diagnosis, and cause unknown.
Is it autoimmune, was it caused by something I had been exposed to like a virus, or was it genetic.
I knew there was a possibility and a 30% chance I would get a definite diagnosis from them, but I gave it a shot.
They told me Iwas a very unique case, as some of the other docs I saw in the past said.
Even at UPenn Med center, they couldn’t help me.