AnonymousJuly 18, 2009 at 2:10 am
Check with the foundation or you might do a search of Gene’s past posts. Go up to the search box and type in dr’s list, or Gene, he always posted a good/bad dr list with many locations included. It might take you a long time to read all of his posts, but he was the Best at keeping lists.
You must get a dr who knows about the different types of cidp. There is remitting/relapsing types. Plus a 100 other types not even discovered or named yet. Take care.
July 29, 2009 at 7:01 am
Hi Tara: I have an excellent neurologist Dr Simon J. Farrow. This doctor diagnosed me with CIDP. I have been taking prednisone since last October, 2008 and have not had any pain since December of 2008. He is slowly weaning me off the prednisone and I don’t know if I will be left with residual numbness in my feet or whether I can ever go outside without a walker.. Right now I walk around fine indoors. I keep getting stronger and my fatigue has vanished. Every other day I walk with my walker to the store and spend 2 or 3 hours walking and shopping without sitting down.
There is an air-conditioned exercise room where I live and on real hot days I have started 10 minutes on the bycycle and 10 minutes on the treadmill.
There is another doctor in Vegas who was recommended on a Neuropathy Forum. His name is Dr. Richard Lee and he is said to know CIDP in and out.
I am going to be 71 soon and I think Dr. Farrow is the best doctor in America.
I was also diagnosed with diabetes a few months before this CIDP. It’s harder to control my sugar with the prednisone but between the exercise and the strict diet my sugar is doing well and that’s very important.
Dr. Farrow said my CIDP is under control and I expect him to reduce the prednisone again next month.
I was not told about relapse or remit, but it may be too soon to tell. Indivduals follow different courses with this disease and I don’t know what will happen in my case.
My whole life seems up in the air and uncertain, but at least I haven’t been given false hopes.
Finding the right neurologist is key in this disease and I wish you the very best.
AnonymousJuly 29, 2009 at 10:21 am
Tara do you mean in Relapse Remitting Relapse and remission. Because that is me. I had my CIDP in the fall of 2004 and diagnosed in April 2005 by then the disease wasn’t getting worse. But in 2007 I had major problem with Tendinitis and hearing and strength. I got 5 days of IVIG treatment that summer and a few weeks of Prednisone for my hearing lost. It was the Prednisone that worked for me. These symptoms didn’t come back till earlier this year. I didn’t realize it was from my CIDP until with time the I felt more pain and having more problems with my hands and hearing.
My Dr told me a few weeks ago she thought I was fine with her basic office examination. It was the first time I saw her where that she didn’t have me go for the nerve tests.
But I pleaded with her that I believe my symptoms were due to my CIDP so she ordered the test. I went last Friday and she doesn’t work on Fridays but I got the results this Monday and I was right I am in a relapse. So from the Summer of 2007 when I got treated to the beginning of this year makes it about 18 months in between relapses.
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