sounds familiar

July 13, 2011 at 9:33 pm

I’ve been following this thread with interest. Here’s my story. I attended a 3 day seminar in Washington DC about 4 years ago. I live in Pennsylvania, so the drive took me about 3 hours. The entire drive I experienced mouth ulcers and tooth pain ( I had just lost a filling and assumed the pain was from the edge of my tooth rubbing against my tongue). I also had to stop frequently to stretch my legs (I had tingling on my right leg- which I dismissed as a long drive in a new car). I got through the seminar, with the use of an oral medication. Two years later, I got an extreme cramp in my right calf muscle, I also noticed I couldn’t stand on my toes on that foot. I saw my primary who sent me to a specialist. The specialist sent me to a back surgeon who sent me to another specialist. This last Doctor diagnosed me with CIDP. I did the 5 day IVIG loading procedure and followed up with 6 months of treatments (2 days every 3 weeks). We stopped treatment after 6 months because I wasn’t responding. At this point I’m still off treatments, things haven’t gotten much worse, but haven’t improved either. I have total foot flop on my right foot, both legs and ankles are weak. I tire easily. I’m interested in finding out the cause of my disease. The food poisoning mentioned earlier was interesting to me. Does anyone think this could have all started with a simple oral infection?

Sounds Familiar!

September 20, 2009 at 8:59 pm

[QUOTE=Carolmlee]I have been wondering about getting accupuncture or reflexology. My feet are the only involved area at this point. I have progressed from walker to ambulation non aided. I walk like a duck, but hey I walk without a cane. My feet are still numb, and clumpy feeling. They feel swollen at the end of the day, but do not look swollen. I am having more pain now as I am starting to get feeling and more movement in the muscles, so they feel tight and I have to stretch feet and ankles and legs often during the day. Just wondering if you thought accupuncture may help, I am on neurontin and this helps, but I hate taking any kind of medicine.[/QUOTE]

Your situation sounds very similar to mine. My chiropractor has been a lifesaver for me. She keep those nerve pathways straightened out. Also she got me in touch with a massage therapist who helps keep my muscles from going nuts, ie. spasms, stiffness, pain. I also have residual foot issues/pain and hate taking medications. It has been 2 years since my dx and i’ve really been cutting down on my nerontin but it’s a slow process. Hope to be off it soon.