Thursday, February 16, 2017


I have started the new drug called Ampyra. It may takes months to see if it works to help me or not. I'm on a 60 day trial and then hoping I can afford it if it helps.

I only have 1 more infusion left in 2 months at the Sheperd Center in Atlanta and then I will be done with HSCT.  My B cells are still at zero. Not sure how long it will take them to come back after my last infusion. At least 3 months after that. I'm guess that bill because of new insurance will be about $3000 or more...just got to wait and see.

I'm now on a new sleeping pill that helps me sleep a lot better. I was having a big issue with falling asleep and staying asleep.

I still have my good and bad days. More good than I use to. I can still over do myself and heat hurts me. I'm still giving this all that I have and have hope still.

Money is tight not working but we some how make it work.

1 comment:

  1. I hope that Ampyra will work for you. And that you are sleeping better. It is an incredible journey but you will survive

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