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Progressive MS

Share your experience with progressive MS. Get the conversation started.

  1. Hi...when I first diagnosed with MS in '87 it was the relapsing/remitting form but after I had a major attack in '94 it is now secondary progressive...by major I mean it hit my brainstem and left a "black hole". I started taking Betaseron in '94 but because it messed with my white cell count I switched to Avonex but now I'm on tysabri.

    Dave

    1. Dave, thanks for sharing your experience. I often wonder if I have moved onto SPMS as well....

      1. Hi all! Thought I'd briefly share my MS story: Dx'd 1985, age 25. NOTHING I could do about it back then, so I promptly put those 2 words "multiple sclerosis" completely out of my vocabulary and mind, aka DENIAL. Never went back to the neuro. Meanwhile, I was able to raise 3 wonderful sons & somehow kept my sweet husband!
        Fast fwd to 2010. Years and years of symptoms finally culminated and there was NO MORE DENYING THAT SOMETHING WAS VERY WRONG!
        Decided to grow up, got into the MS clinic at UTSouthwestern Dallas, dx'd with SPMS immediately. MRI's showed major active disease, a sizable black hole & innumerable lesions. Started Gilenya 11/2010 - & successive MRI's since then show no active dz or dz progression! Thank God, literally.
        Now I am just dealing with the symptoms that I call collateral damage: fatigue, inability to stand or walk very far - noodle legs/drunk walking- are the result; muscle loss due to inactivity, blurred vision at times & maybe hearing loss? Biggest complaint are my COGNITIVE PROBLEMS! I go on "overload" easily, too much sound, too much light, too many decisions, etc... Even my once creative self finds it nearly impossible to start a project! If this is as bad as my SPMS gets - compared to what SO MANY others are dealing with - this is NOTHING.
        MY ADVICE: Be as proactive with your health as you possibly can!

        1. Your collateral damage symptoms are exactly the same as mine. I am most concerned about my Cognitive decline and my memory is almost nonexistant!! Bladder troubles and balance issues along with that "drunk walk" you mentioned are no picnic either! Vision and hearing troubles have cropped up now too. I've been diagnosed since 1996. Have been on Betaseron since then. As my symptoms have worsened over the past couple of years I'm ready to try something new. I'm beginning to start at the UT Southwestern MS Clinic in Dallas as well. My first appt. is with Dr. Hart on Oct. 28th

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