Hi, I have battled the MS system for 15 yrs, finally got a diagnosis on wednesday. PPMS. The neuro is the head of University of Colorado, I am confident in him. If my blood work comes back ok, he wants to start me on Tysabri, as the progression has really gotten bad the past six months. i have read that there is no treatment for PPMS, however I thought I'd check and see if anyone out there has done the treatment and if they saw a change. I hear it helps with fatigue, which, besides my gait, eye sight, memory and vertigo, is my worst enemy. I am a mom of four, two teens still at home, one is a double amputee. I have a great husband, live in CO, which has a very high rate for MS, and it is almost impossible to find a support group. anybody wanna help?
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I am sorry that you have been dx'd with PPMS. I have PPMS, too. There aren't FDA approved drug treatments for PPMS. I haven't heard about using Ty but if the doctor says you should try it, and you feel it cold be of benefit, you have a tough decision. Do you know if you are + or -for the virus that causes PML ? Read all that you can about Ty. I wish you the best in your decision. -
I also have PPMS so I am not on any disease-modifying drugs since they are mostly for remitting relapsing.
I am on 4-aminopyridine which does help a little with fatigue. Maybe ask your neuro about that or Ampyra.
Good luck!Comment
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Thanks!
To the two folks who responded to my email in regards to Tysabri, I really appreciate it. My neuro does not think there is a difference between relapsing and remitting, so he is suggesting T, if my blood tests come back ok. It is nice to be able to "talk" with people who know the this life. Praying for you.Comment
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