Best Specialist?

Hi, all.

I noticed symptoms of CIDP over a year ago. I spent 8 months trying to find a diagnosis, finally getting one from a neuromuscular specialist at Shands/UF in Gainesville, FL. It took 2 more months to get treatment started, and since they have stopped about 6 weeks ago, I am noticing a heavy decline. I have been in contact with this specialist to restart IVIg or steroids (I responded relatively well to both at separate times, but each only lasted 8 weeks and are the only treatments I have received in 12 months).

I am curious, I know this is a rare disease and many doctors do not know of it, but does anyone know if there are any specialists in the US that are regarded as the best? I have seen 5 neurologists over this past year, being dismissed with my symptoms a mark of a virus (negative), anxiety (I’m a therapist and this is not a cause), and MS (also negative). I am trying to figure out where I can get the best treatment and support, and I am hoping one of you lovely people will have some other wise words.

– Kelsey