Viewing 4 posts - 21 through 24 (of 24 total)
  • #203087
    Reply To: Late Onsetters!

    Hello, I’m new here. My husband is now almost 60. At age 56 he started getting proximal muscle weakness which has progressed and now he is walking with one crutch and uses BPAP overnight. His biggest problem is sit to stand. No diagnosis as yet. Still awaiting results of genetic testing. Neurologist fairly sure it’s a non “bog standard” dystrophy despite no family history. Of note imo he started to get symptoms within 6 weeks of being prescribed Simvastatin which he then stopped taking. Disease has progressed however. We are struggling to cope with the huge uncertainty over everything.

    Dodioban
    Participant
    Posts: 0
    Joined: 04/02/2024
    #203088
    Reply To: Late Onsetters!

    Hello and welcome. Sadly until the true diagnosis is revealed there is not a lot you can do. Your GP and neurosurgeon seem to have done the correct things for you, then once you find the correct diagnosis then you can begin to deal with its consequences. Certainly Simvastatin and muscles weakness is within the list of side effects that it rarely can cause. It is also likely that it has exacerbated and existing muscle weakness too. As he has stopped taking it and there is further progression of his condition it would tend to make you think of the latter. In the meantime to concentrate your thoughts on how you cna deal with the affects of what he has. You did not mention if he is seeing a physio. That would certainly be on my to do list if not. Also please look at his daily life in detail, you might find something in there you have not thought of already that contributes to his continuing weakness.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #203089
    Reply To: Late Onsetters!

    Thank you. Yes he is seeing a Specialist Neurophysiotherapist who is excellent. Have also had OT input. We are awaiting a call from an NHS specialist advisor which is what led me to look at this site. I’m hoping the advisor will be able to help with our numerous questions and worries.

    Dodioban
    Participant
    Posts: 0
    Joined: 04/02/2024
    #203090
    Reply To: Late Onsetters!

    at is really good to know. We are always here if you need us.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
Viewing 4 posts - 21 through 24 (of 24 total)

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