Intro & Thanks! (Sorry if its long!)
AnonymousMay 15, 2008 at 5:01 pm
I wanted to start by thanking everyone for all of the helpful information I’ve gotten from all of you, you see I’ve been “lurking” on this board since September when I was first diagnosed. The information has been invaluable, and I really want to say thanks. I spoke with DawnKeviesmom and someone else at the Chicago area meeting a couple of weeks ago and that was very helpful as well. so THANKS!
My background is I was diagnosed in September with GBS after 2 weeks of numbness and tingling, my legs feeling like they were in concrete, and difficulty walking and with stairs. They did 5 doses of IVIG and I saw some improvement, but never to 100%.
After 3 weeks that “concrete feeling” returned so then I had 5 PE, which gave me a little improvement, but it only lasted a week to a week and a half.
At that point we changed to a neuromuscular specialist in the city and after testing she did 5 days of IVIG. She also added steroids – initially IV and then orally weaning down over 6 weeks. She still kept the diagnosis at GBS at this point. I got better, never 100% probably only about 80%, but after 3 months I relapsed again.
She then changed my diagnosis to CIDP and gave me two doses of IVIG. That was February. The end of May will be my next 3 month mark so we’ll see if thats my pattern. As of now she wants to wait to see what my pattern is and treat once symptoms recur. I have mixed feelings on that and will be seeing her again next week to discuss it. Now I’m probably at 85%, but I guess I’m greedy and want to get as close to 100% as I can.
So thats my scoop, sorry its so long! Thank you all so much for all your support! 🙂
May 16, 2008 at 12:07 am
Glad you joined us and good luck at the doc when you go!
Dawn Kevies mom
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