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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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  • Lisa Salberg
    replied
    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!
    Lisa

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  • Linda
    replied
    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

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  • liona
    started a topic Now I have 2 rare syndromes! Aren't I lucky??

    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------

Today's Birthdays

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