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PRMSer's What are you taking? What is working? Symptoms? Anyone?

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    PRMSer's What are you taking? What is working? Symptoms? Anyone?

    Hello, I am finding this truly sucks ALL the time. Did your symptoms come on quickly over a year or so? I am finding my PRMS happened like that. I always had aches and pains like anyone else, then one day dizzy and falling, fainting, collapsing, weak, pains... in just ONE year! Now my body is always like this. Never do I get a break. If anything it only gets worse if I work (physical labor).

    DOES ANYONE HAVE BINO? The BINO never goes away.

    Am I going to lose my ability to walk soon? Again does PRMS affect / happen QUICKLY?

    It just seems like my body is falling to pieces fast. Does it progress fast for you? I am VERY active or try to be. I feel if I stop "doing" I will die so I just keep pushing my body until I can't physically do anymore.

    I am taking Gilenya for 20 days now.
    Thanks for your help.

    #2
    HI I HAVE PRMS. MINE STARTED FAST . NOT REALLY SURE ABOUT WHEN IT STARTED AS I WAS DIAGNOSED LATE. I ALSO HAVE RA AND SPINE CORD PROBLEMS . THE SYMPTOMS OVERLAP.
    STARTED WITH A CANE IN 2006 BY 2008 HAD TO MOVE TO A WHEELCHAIR.
    WITH PRMS ITS PROGRESSIVE FROM THE START. YOU'LL GET THE OCCASIONAL RELAPSE HOWEVER WITH OUT REMISSION .
    NOW THAT SOUNDS AWFUL I KNOW. EVERYONE IS DIFFERENT . NOT ALL PRMS PATIENTS GO ON TO USE A WHEELCHAIR. ITS IS MORE COMMON WITH PRMS THAT OTHER MS TYPES.
    ACTUALLY THE TITLE PRMS WAS CHANGED TO PPMS-ACTIVE BACK IN 2014 .
    MOST BECAUSE OF THE PROGRESSIVE NATURE OF THE DISEASE AND FOR RESEARCHING PURPOSES . I WISH I HAD THE TIME RIGHT NOW TO FIND THE SITE WERE IT DESCRIBES THE CHANGE IN DEFINITION OF THE SUB TYPES OF MS .
    http://www.nationalmssociety.org/What-is-MS/Types-of-MS

    THE MS FOUNDATION HAS A YOUTUBE PAGE WERE PPMS-ERS DESCRIBE THEIR LIFE. THE ONLY DIFFERENCE WITH PPMS AND PRMS IS THE RELAPSE WITHOUT REMISSION .

    IM RIGHT NOW WAITING FOR A AUTH TO GET A PORTACATH PLACED AND THEN START TYSABRI .
    BEEN ON COPAXONE RITUXAN AND TECFEDERA . I COULDNT TAKE GILENYA DUE TO MY VISION LOSS . I'M LEGALLY BLIND .

    MOSTLY BED BOUND ( BUT KEEP IN MIND I HAVE OTHER ILLNESSES CONTRIBUTING TO THIS) .
    HAVE THE BAD NUMBESS IN LIMBS AND RIGHT SIDE OF FACE. MEMORY LOSS ,TROUBLE SWALLOWIN ,BLADDER AND BOWEL TROUBLE. SPASMS ,TREMORS ,HEADACHES ,WEAKNESS.
    AND A FEW OTHER THINGS.

    ITS ALL A CLIMB . DONT LOOK TO MUCH INTO THE FUTURE . IT MAY NOT BE AS BAD AS YOU MAY THINK. LOOKING AT THE WHAT IFS IN THIS LIFE CAN MESS YOU UP . TAKE THINKS WHEN AND IF THEY HAPPEN ONE DAY AT A TIME .
    MS IS NOT A DEATH SENTENCE . WE JUST ADJUST TO OUR NEW NORMAL .
    dx.SPMS (baclofen,gabapenin,norco)
    started tecfidera 7/10/2013
    rituxan 11/13/2012 stopped due to side effect &it didn't help me (for RA and MS)
    copaxone started 4/2012 but stopped due to bad allergic reaction
    Matt.19;26 “With man this is impossible, but with God all things are possible.”

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