Another new person with a question
AnonymousMarch 4, 2007 at 3:53 pm
Hi, I just recently found this sight. Let me say first that the support you all offer each other is amazing. I was diagnosed with CIDP in 1997.In a wheelchair by 1999. I have tried prednisone, plasmapheresis, cellcept, and cytoxan all with little to no benefit. I maintain what strength I have with monthly IVIG infusions and physical therapy. Even made a few gains in the past year: I walked a whole 50 feet with a walker. Doesn’t sound like much but it felt great! Anyway here is my question. After a recent MRI my neurologist found spinal ataxia. It seems my spinal cord is severely atrophied. He has never seen this with CIDP before. But after many tests can’t find any other cause.So has anyone else experienced this? Thanks for your time.
AnonymousMarch 4, 2007 at 4:04 pm
I personally haven’t heard of this, but that doesn’t mean it doesn’t happen with GBS/CIDP. My suggestion type “spinal ataxia” into your search engine, it will take you to various sites with a wealth of info, much to much to post here
Wishing you the best.
AnonymousMarch 4, 2007 at 11:29 pm
I copied this from another thread, posted by gbsfi Admin. It tells of a way that we can help raise money for research by using GoodSearch search engine.
Administrator Join Date: May 2006
Making money for the GBS/CIDP Foundation International – and anyone can help!
A search engine entitled GoodSearch will send the Foundation one cent for every search made with their search engine. We have checked and double checked GoodSearch and it is 100% legit.
GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission… every time you use GoodSearch.com, money is generated for our cause.
GoodSearch donates half its revenue, about a penny per search to charities. Now you might think what difference is a penny going to make? Well if 1,000 supporters searched just twice a day, we would receive an estimated $7,300 per year.
Remember GoodSearch is powered by Yahoo so you get the same proven, high-quality results.
To take advantage of this opportunity go to [url]www.goodsearch.com[/url] and be sure to enter GBS/CIDP Foundation International as the charity you want to support. The more people who use this site, the more money we will receive so please spread the word. Once you set GBS/CIDP Foundation as your default charity all you need to do is get the GoodSearch toolbar for your browser.
Thank you in advance for taking a second to set this up and help us in continuing to make a difference.
AnonymousMarch 4, 2007 at 11:31 pm
Welcome to the forum, sorry none of the standard treatments for CIDP have worked for you. I was strictly in a wheelchair from April of 2002 until the summer of 2004, when I began to walk minimally with a wallker. Then I graduated to canes by that fall & finally down to one cane by the following spring. Around the house I just use AFOs to walk; also got most of the use of my hands back. I was also refractory to IVIG, PP, & solumedrol infusions, but I was lucky that massive cytoxan infusions back in 2003 finally arrested my CIDP & allowed some nerve regeneration.
I remeber when I would go out with my walker in public & people would feel so sorry for me because I had to use a walker at such a young age. I know this because they would actually tell me I was too young! Little did they know how wonderful it felt for me just to be upright after such a long time!
I was curious about your dx of spinal ataxia, as ever since I began walking again I have dealt with lower back pain. I have been to 5 different doctors, had x-rays, & recently tried PT (which just made it even worse.) I was wondering if it was caused by sitting in a wheelchair for so long, but I have never had an MRI since 2002. I might try another cortisone shot. BTW tell us a little more about yourself, hope to see more posts from you…
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