Good luck with your mission. I think you are going to be fighting an uphill battle on this, but its cause is worthy. You can google all sorts of testimonials from people having adverse reactions on you tube. Coincidence?
I also think the people regulating the fund are sympathetic, but beauracracy and rules require more than a maybe regarding gbs, and hence is flawed. B.T.W. It is (GBS) listed on the application, but is hidden under the heading of something like “other causes”. Can’t remember the exact title.
Alice references six articles about the use of hematopoitic stem cell transplantion in autoimmune disease. The first article she references is the only case of CIDP–that is ONE case report in which one young lady had a non-myeloablative hematopoietic stem cell transplant for CIDP. The conclusion of that article is “Although follow-up is short (22 months), this promising result forms the basis of further studies of autologous HSCT for refractory CIDP.” The other articles talk about HSCT in other autoimmune diseases–some neurologic and some where the autoimmune attack is on other body systems. There is only one patient with CIDP in all the studies.
I hope that all of us try a tiny bit harder to be kind to one another and to provide support and hope and information.
WithHope for a cure of these diseases
Gene, Please tell me how to get my story out there so I can get help. I don’t know how to start in this web site. I am a 62 yr old who in the last 6 months has had breast cancer, 6 weeks of radiation, a stroke and then Guillain Barre. I take 3300 mgs of Gabapentin a day but don’t think it does anything. My insides are crawling all the time and the pain in my neck is awlful. Sleep doesn’t come without lots of Ambium. Please help me find out more about this GBS and how people deal with it. Thank you.
I don’t have GBS, but my brother does — so I’m participating in this forum on his behalf.
I wanted to tell you that I understand your dilemma about wanting the tests to reveal what’s going on… but wanting the tests to say that every thing’s OK / normal.
I think it’s best to be informed — so I think the testing is a good idea — and if it’s not so good news — well, then at least you know what you are dealing with and can develop your plan for how you’re going to treat it.
I wish you the best…