Linda–was curious as to what your mobility was before starting ampyra and how much did it improve after, I too asked about trying it–my neurologist called the ampyra drug co, after talking with them she said I shouldn’t try it because of the type of cidp that i have. Mine is caused from a paraneoplastic disorder of potassium antibodies and apparantly ampyra works by doing something to the potassium channel?? It seemed to me that would be more reason for it TO work–but im not a dr and do not know as much about the ion channels as she does. Glad that it is working for you:) Lori
It is funny that I just saw this posting because my Doc said “since you are going to the US for 12 days, see if you can get AMPYRA, because I think it could help your CIDP”.
Yesterday I arrived in Santa Clara just to spend 7 hours at he hospital. I’m feeling so weak. I had GBS in 2006, then diagnosed with CIDP 3 months later. But something happened in the last seven days, because I feel like when I had G BS, only not as much weaker. The doc that saw me at Santa Clara Valley Medical Center yesterday told me it could be a “flash” of GBS…Anyway, I’m watching it; can hardly walk.
How could I buy AMPYRA in the US? I’m not a resident, don’t have a social Security number.
Yes i spoke to my MD and also to neuro and not any helpful results.They both said it is to early for the new drug.It was however shown and talked about to great detail on the Today show a while ago.It sounds like it helps to repair the nerve fibers. Many blessings