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  • Columnist Writes About His Unwavering Care For His Daughter

    Posted by ryan-berhar on June 27, 2019 at 5:03 pm

    Hey everyone, here’s Michael’s newest column. It differs from the typical nature of his column, as this is less of an update on Ella’s life, and more of a flashback to what her diagnosis was like. What stood out to me was the nerve conduction test Ella had to do. I’ve never heard of this being used to help diagnose SMA before, and it’s not only sad that she had to endure it, but it’s also difficult to watch your child suffer like that. With my own diagnosis, my doctor could apparently tell I had SMA simply by the way I threw a ball. Much less invasive haha. Every SMA diagnosis is shocking and brutal for the family, and this was no exception. If you happen to be going through this now, know that you’re not alone. There are groups like this full of people who have been there. What’d you take away from this column? Do you have any questions?

    https://smanewstoday.com/2019/06/26/caregiving-commitment-parenting-taking-care-ella/

    halsey-blocher replied 4 years, 12 months ago 3 Members · 4 Replies
  • 4 Replies
  • dennis-turner

    Member
    June 27, 2019 at 5:45 pm

    Ryan, I was also diagnosed using electrical transmission.  In fact I have been tested this way 4 times, the last time my Neurologist said wait a minute, I have to have all the student interns see this! So she left me laying naked on the table with needles and wires sticking out to get them. I was early 20’s.

    When further doubts were raised regarding my diagnosis a genetic breakdown from a second muscle biopsy confirmed the original diagnosis.

  • halsey-blocher

    Member
    June 27, 2019 at 8:05 pm

    I’m surprised they did this test on someone so young. Most doctors stopped using this method a few years before I was born. Glad to see Ella is excited for her new bathroom!

  • ryan-berhar

    Member
    June 27, 2019 at 8:12 pm

    It just seems entirely unnecessary. There are other ways to test. I’m never letting them do this to me lol

    • halsey-blocher

      Member
      June 28, 2019 at 8:41 pm

      Most doctors just skip straight to the blood test. I’m so grateful no one ever did this test on me.

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