I sent everything in today! My neuro office is sending her paperwork and I sent mine from the other hospitals today! I switched from lyrica to gamapentin(sp) and I have not felt any different.
Today I woke up and my hands are stiff and so are the back of my legs, I’m a little concerned but will see how I feel in the morning.
Wish me luck to be able to get in to see them!
Hi everyone! I just got back from Chicago & I was accepted to the clinical trial! Dr Burt’s office is now submitting to my insurance. I am so excited about this. I know in my heart, soul, & mind that my insurance will approve it. I am on m way to a better life 
I will keep u all posted!
Heather
Yay...I am very happy for you...I have been following your discussion for a few weeks now. I have also just finished gathering my medical records to send there too. I have been on plasmapharesis every 10 days for 18 months now (which is not very fun) and that was after 4 months of IVIG failed. I am a married, 37 year old mother of two and this has drastically affected my quality of life, which is why I want to apply for the program. But I'm just so afraid of rejection-I think its because I've been in and out of the hospital so many times since diagnosis that I'm just used to getting bad news. If you don't mind me asking, based on your condition and your acceptance, what are your thoughts of someone with my case being accepted?
I would like to make myself available for any research but am a UK/EU citizen.
If anyone hears of anything closer to home count me in if needed.
I can feel your excitement.The UK is right behind you.Positive mental outlook!.
Heather R said:
Hi everyone! I just got back from Chicago & I was accepted to the clinical trial! Dr Burt's office is now submitting to my insurance. I am so excited about this. I know in my heart, soul, & mind that my insurance will approve it. I am on m way to a better life :-) I will keep u all posted!
Heather
All, I have been reading all about your circumstances and it just amazes me at the similarities of my condition and what I have been going through. I have also been considering the SCT, but not sure at this point if I am far enough down the road to be considered. I was diagnosed in May of 2012. I started out getting IVIG and like others I got the aseptic meningitis headaches. I then was put in hospital in Sept and Nov of 2013 for plasma exchange and was started on prednisone along with Imuran. I was doing great for about 10 months and then it came back. I am now facing having to go back in for another 10 day stint in hospital for the PE. However, I stopped taking the prednisone back in July as my Dr said I could if I was feeling ok. It was about a month after I stopped taking the prednisone that I started getting symptoms again. I cannot go back on prednison and my Dr. said he understood. It causes too many side effects. I am just really at a loss at this point as to what to do. I assume I will get another round of PE, but I am not sure if it was that or the prednisone that put me in remission for the 10 months. I may just try the PE again and if it doesn't last long at that point maybe look into the SCT. I am fully functional with the exception of weakness in my legs, hands, etc. I was running 2 to 3 miles a day this summer when it raised it's ugly head again. Now I can't excersise and it just sucks big time. But one thing I do know, God has a plan for me in all of this and he will use me in some way to assist others. But right now, it is just hard to see it. :-) thanks for all your comments, it really helps just to vent about it and see that I am not alone in all of this and that I can see success stories like some of you have.