AnonymousDecember 27, 2006 at 8:51 am
My Neurologist says I am improving on my CIDP except for my hands and I get tingling and numbness in my hands this spring and this fall/winter with the dropsy’s(sp?) at time at work. My Family DR says maybe it is Raynaud syndrom but didn’t say to much about it.
Can you tell me how it affects you? How were you diagnose with it?
AnonymousDecember 27, 2006 at 2:41 pm
Hi Laurie ~ yes, I had a nasty case of the syndrome. I had 3 fingers that became ulcerated and it took over 7 months to heal 2 of them! They were so painful that I was considering amputation for one. With time (years) I am much improved ~ as with the GBS residuals.
In America, we are great at dividing the body into separate “pieces”. I firmly believe that I had a “Raynauds-like” residual from the GBS. It’s like being diagnosed with Fibromyalgia when really it is residuals from GBS/CIDP.
The important bottom line is to keep yourself warm ~ whatever it takes. Wool mittens, socks and silky long underwear (Cuddleduds!) have become my best winter friends 🙂
AnonymousDecember 27, 2006 at 5:00 pm
Thanks for the replies. How it affects me: my fingers and toes get numb and turn completly white when I am the slightest bit cold. When I attempt to warm them and return circulation, it becomes painful – throbbing and tingling – sort of like the “pins and needles” sensation I felt with GBS. Doctor does not seem too concerned. But I’ve always thought it was a residual GBS condition, due the nerve damage in my extremeties. Thanks for the advice, Judy! And, were you ever on medication (blood thinners?) for it?
AnonymousDecember 28, 2006 at 12:01 am
No, I was not on blood thinners for Raynauds but while I was very ill and not expected to live, my blood became very thick, sticky and the color of eggplant. It was yucky!! I gave myself Heparin shots for several months as well as receiving “light therapy” for my blood. Those were the first little steps to “turning things around” for me. 5 months into the GBS I contracted an extremely rare lung disease so had to fight for my life for many years ~ and I’m still here!! Alopathic medicine did not offer all that I needed so I also incorporated many complimentary modalities. There just isn’t any 1 practice that has all the answers. Good luck!
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