[symposium-profile]

6 comments

  1. I wonder how people manage all the information out there about @HSCT. I consider myself willing to accept quite a bit of risk to improve my life/health, but the idea of trying to actually navigate doing the procedure is overwhelming! I suppose that I am really risk-averse, but it’s because I don’t have the background to understand what could go wrong and how likely it is, and I certainly don’t have the ability to determine which facilities are staffed appropriately, what are the qualifications of same, etc. Etc. I feel a little desperate and I know that many others do, too. How do you do it?

    • Donna Johnson says:

      I with you Lisa I have the same concerns and I do consider myself pretty desperate as well. I’ve been diagnosed with primary progressive MS in 2006.

  2. Suz says:

    Diagnosed in 1999, I’ve discovered to be patient & wait until I feel better before attempting anything new. Otherwise, its overwhelming & ruins rest of day.
    Ask often for help. Tell providers you need help & where to go to ask.

  3. JuNae Jones says:

    Hello, I was diagnosed in 1998 with multiple sclerosis and was told by my neurologist to start on betaseron then in 2003-2016 I was on Tysabri then was diagnosed positive for JC virus my neurologist had me go to the university of Utah to see the neuroscience doctors and they said Tecfidera would work, but it didn’t work so now I’m on Ocrevus. It’s frustrating I’m going to start treating silent infections naturally with diet.

  4. Diane says:

    I will be turning 65 at the end of this year. I’ve had PPMS for 18 years and am now considering Ocrevus. I fear I may be too old and the side-effects scare me. I’m wondering if anyone else my age has had experience with this drug?

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