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Now I have 2 rare syndromes! Aren't I lucky??


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liona Find out more about liona
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  • Now I have 2 rare syndromes! Aren't I lucky??

    Well, I am Liona, and my strange health has always been mysterious. First they told me I was crazy. Then they said I had MS, accompanied by unusual seizures. Then, at 50, they finally diagnosed me as having the rare birth defect, tethered spinal cord. They operated on it, and left me with a huge rehabilitation job on myself. Now, 6 years later, I was better enough that I was puzzled why my heart function still seemed so bad. Back to testing, and so the new diagnosis was located. HCM!!!

    I'd been on beta blockers for 6 years, but we all assumed that my odd heart function was part of my odd nervous system. It was a great surprise that a new and different problem was diagnosed. It now seems that part of the symptoms I thought were the tethered spinal cord, were probably due to the heart problem------ Since I also have diabetes---Well, It seems quiet impossible to sort all this out, doesn't it??

    I don't mind admitting that I am getting mighty discouraged with everything about me being wrong and weird------

  • #2
    Liona, Welcome to the board. Glad you found us. Lisa is moving the HCMA office today so it may take her a day or so to get back to you, but give her a call at the HCMA # - 973-983-7429. You will get a lot of valuable info and find out just how common your story is. Different names, different details, but the underlying thread is the same - diagnosis came slowly with a lot of detours along the way. Linda


    • #3
      We ALL feel that way a bit - But even though we have "rare" conditions does not mean that our lives have to be that different then the rest of the population...we just appreciate things a little differently!
      I hope you are receiving good care for your HCM and have had an evaluation by those who can best treat your condition.
      Call the office to chat!
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)