Wish I could help

February 14, 2011 at 12:19 am

I have not had that procedure. But if you get it done, I’d like to hear about it. I have had the IViG, but developed blood clots from it. I was given SoluMedrol infusions (high doses), and put on high doses of Cellcept. It has been over a year on this treatment. I am seeing some drastic improvements just recently. It’s amazing how slowly this cidp improves. Have you tried the Solu Medrol infusions? Or Cellcept? I was wheelchair bound and I am finally taking steps (with my afo’s on). I have to use a cane but it is amazing to me.

wish i could help!

June 4, 2008 at 9:58 pm

Hi! I have a ton of disability questions, too. I just exhausted my short-term disability, so i have no income now. I wish i could go back to work, but that is not possible, so i wonder about any kind of disability i could get until im well enough to work again.

I read somewhere in the past few days that there is a list of diagnoses and that if your specific diagnosis isnt on that list, then the process takes forever! This info was from a professional on a gbs website, but i dont remember which one. I do remember her saying to keep a journal of MEASURABLE information. For example, rather than saying that you can’t walk very far, you should write, “Today, I could only take ten steps before i had to rest, related to shortness of breath and weakness. It took 15 minutes of rest before i regained enough strength to walk another 10 steps”.

If i find that site again, i will let you know. Good luck!