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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.
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.
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.
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.
Reply To: Late Onsetters!Hi I’ve just been diagnosed with BMD age 42. I’ve been struggling a bit with and hills and stairs for a few years and have recently started occasionally falling over when out walking.
Reply To: Late Onsetters!Hi. I was diagnosed last year at the age of 57 with Oculopharangeal Muscular Dystrophy (OPMD), having previously been very fit and healthy and having no family history. I have the standard symptoms of temporal wastage, ptosis, trouble swallowing and muscle wastage in hips and legs that affects walking, especially uphill and stairs. One other symptom that my neurologist hadn’t seen before and no one seems to be able to get to the bottom of is why I experience tension type headaches to either side of my head (not the front) as if I have a clamp on my head.Only happens every few months but I also experience severe fatigue at the same time so have to completely rest. Does anyone else get this symptom? It would be good to hear from you.
Reply To: Late Onsetters!Hi Holly, welcome to the forum. Hope you find some answers about your tension headaches.
I’ve suffered with anxiety for a long time, and it’s surprising what the physical symptoms can be, so I’m wondering if that’s what it could be. Even if you your mental health was previously great, having MD is a difficult pill to swallow as it were. I could be completely wrong but thought it was worth mentioning.
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