Reply To: Support Group in NYC ??

June 13, 2013 at 2:49 am

Hello to all! I am looking for support groups, chats, doctor names, resources, act in New York City area and Hoboken, NJ. I was diagnosed three weeks ago with CIDP after many tests to rule out MS, cancer, DermoTSytis, etc., My nerve biopsy concluded CIDP, but because it took 2 years to get there (my first two doctors didn’t bother to even test me, I ended up in a hands of a total “quack” who convinced me to have a SCS implant, which was totally useless for me and my horrid pain, and very helpful to his $$$ pocket. Only after a year I finally left him, was able to find a neurologist, who then send me to remove the SCS implant (surgery), because I couldn’t get MRI tests, etc with the implant. SO, ever since February 18th, when I had my SCS removal to now, I had one procedure after another, which I am grateful for – my CIDP is so old and well progressed, plus severe Neuropathy in my feet and just as sever nerve damage in my feet, which makes for one nasty and very painful condition… I need help with pretty much everything – doctors in a field, hospitals, support groups, personal stories (whoever is willing to share), advises, suggestions, anything please… It’s very lonely out here …