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  • My testimony (for what it's worth 😉🙂)

    Posted by Lionel Roosemont on October 16, 2021 at 8:03 pm

    In reference to the article:
    Voice Issues May Be Sign of Late-onset MG, Case Report Shows and

    How easy it is for doctors to miss myasthenia Gravis

    I’ve been receiving the newsletter for some time now.

    What finally made me decide to join, was the article published two days ago. I greatly recommend it

    It made me realise that my symptoms, as they were in the beginning, are more exceptional than most myasthenia onsets, than I had thought. The first important signs of my condition were vocal.

    I first noticed something was not normal about 5 years before I was diagnosed. From my childhood I have always liked to whistle and around 2014 I noticed that at times I wasn’t able anymore to get the necessary tension in my lips to whistle for longer than 5 seconds. I found it awkward, but didn’t think too much about it. I was about 55 then and thought, ‘Well maybe that’s just something that happens with aging’. When this got a little worse, I had a visit to a neurologist, but some superficial examinations didn’t bring anything to light. In the following years I had 4 visits to different neurologists, where a whole series of examinations were done. At the end of the last series when the most thorough examinations were performed for several days, the conclusion was that there was nothing wrong with me. When I asked the doctor what I should do, he told me if I had any more complaints, I might want to check in again in a month or so. A few weeks later I started having trouble speaking, after I had been nibbling some snacks for half an hour. My speech was ‘slurry’. The doctor was called and I had to go to hospital immediately with suspicion of brain thrombosis, which was not the case. I had to stay for observation and the next day the neurologist did a test, by letting me talk for some minutes and my voice again became slurry to the point I became unintelligible. But I had to continue talking and at the same time I got an injection with pyridostigmine. Within 1 minute my speech was ok. I was told that Myasthenia was the suspected condition. A blood test confirmed it.

    The slurry speech was my only clear symptom of myasthenia. But once it was diagnosed, the jigsaw pieces fell in place as I continued studying. For instance in the year before I had several visits to an Otolaryngologist, because my hearing function on the left side fell partially away and would later come back, but no explanation could be found. Once diagnosed with myasthenia, while studying the condition more deeply I discovered articles about the relation between hearing loss an myasthenia. Some articles even state that testing hearing can be an early diagnostic tool to diagnose myasthenia, as first the smallest muscles are impacted (like those of the inner ear). Having problems with whistling is another one. I also had very slight swallowing, choking and breathing problems. In the mean time I now also have generalized myasthenia and my legs and arms are getting weaker. But I never had any eye problems. Although I have had to close my one-man-business, I am still very active in helping in a halfway house. And even as some days are physically difficult and the future might not look as sunny as I would like, I fully enjoy life.

    Lionel Roosemont replied 2 years, 9 months ago 0 Member · 0 Replies
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