January 26, 2017 at 9:09 pm
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.
January 27, 2017 at 6:54 pm
You may want to look into these two hospitals that are said to have good CIDP specialists:
Mayo Clinic Jacksonville takes the following plans:
John Hopkins takes the plans listed here:
There is also the center of excellence in Tampa: USF Health http://health.usf.edu/medicine/neurology/patients.htm
You can get referrals from a GBS/CIDP Foundation liaison in your area. Please find ones here to contact:
February 5, 2017 at 3:59 pm
Hello, I don’t know if it’s allowed or appropriate to list names on this site, but, here goes! I don’t know what I would have done without the genuine help and understanding (undenyably because of their knowledge) of 2 Incredible People at M.D. Anderson and my Oncologist! At M.D.Anderson, Houston, Texas is: Dr. Karin Woodman and her A.P.N. Christa Seligman. My Oncologist: Dr. Eichler, Texarkana, Texas. His entire Staff, and especially his Onc. RN, Miss Beverly (I Love that Lady) at Texarkana, Texas Christus St. Michael’s. I hope and pray that you are able to find Professionals like these in your area! Kevin-
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