My first post
Hi LindaH, I also was diagnosed with CIDP in 1998. I also take Clonazepam at night to relax my muscles and it lets me sleep for at least 4 hours straight without waking. I also take Lyrica once a day to make the pain in my spine to go away. But I still haven’t found anything to make the tingling, numbness or the arthritis pain go away. I have noticed though when I was under IVIG for a year and a half that it made the numbness go away but nothing else. According to all the neurologist that I have seen since diagnosis is that I have an acute case and that they can do tests (MRI, CAT scans, Spinal taps and blood work) which I have done but still they have not come up with anything to make this better in any way to function better. When this disorder reared its head it also came out with rheumatoid arthritis, osteopinia, osteoporosis, liver problems, blatter problems, hearing problems and vision problems. I do tests regular for blood clots to be on the safe side. My father passed away in 1999 with a massive stroke also having CIDP and my grandfather (his father) also passed away in 1976 of a massive stroke. Sorry to ramble on but after all this time it is still hard to keep going.
My first post
GBS onset January 2007
My residuals include
palms – constant tingling and numbness
feet and legs to knees – numbness, tingling, tight sock feeling increasing with physical activity.
face – tingling when I have overdone.
I thought these symptoms would be gone by now. I am afraid they will be with me forever. It is so hard to guage any progress. My onset was mild compared to many listed here. I was never hospitalized. So I assumed my recovery would be faster and complete. But these symptoms won’t go. Sooooo frustrating. Thanks for listening.