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    SPMS

    I was given the new title of SPMS 2 days ago. I've been on tysabri for over 6 years. Neurologist feels risks outweigh benefit at this point. So now, I'm off of everything. Why does everything feel so different now? I'm sad. How fast will I progress?
    I know there are no answers to these questions. Can anyone share their story?
    Thanks everyone. Hope we're all well!
    Stacey

    #2
    Hi Stacey - I got that status about 8 years ago and like you, felt sad. I had to quit work 6 years ago as my job for 30 years required me to be alert, focused with the ability to use quick processing speed as well as retain new information at all time. I failed on all angles.

    My doctor and I agreed at the time to go off meds as nothing was around to help. I know that there are new meds on the horizon for SPer's. Remyelination is the key. http://www.medscape.com/viewarticle/843261
    Right now I'm done with taking an DMT.

    I am grateful that I'm SP w/o flares, but I'm not happy that my abilities have diminished. It's been a very slow decline for me. I was using a cane at first and now in the last year I've also added a walker and wheelchair depending on how far it is to get around. You may be different! We all are! Keep healthy in body and mind, exercise to your ability, and try not to worry about where this will take you - OK? I really don't go down that road but focus on what I can do right now. Worrying for me takes too much precious energy!

    If your walking is affected you might be interested in Ampyra https://ampyra.com/ I tried it but I was among the unlucky few that didn't see any benefit beyond feeling less fatigued

    I hope you have an easy road ahead.
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      I was told I'm SPMS about 3 yrs ago. I tried dmd's in the past and will not take them any more. They are not my savior. I tried Ampura, and like Seasha I'm also the unlucky few that had no results, negative or positive, just no results. I started with a cane and now use a walker all the time to get around. I use a scooter for distances.
      Karen

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