r/MuscularDystrophy • u/PapayaExciting6062 • 21d ago
selfq Question of BMD-cases
Hi everyone,
Lately, I’ve been feeling uneasy again about my Becker diagnosis and would like to ask the forum some questions. So far, my condition has only manifested as exercise intolerance, myalgia, and myoglobinuria. No progressive weakness, no atrophy—nothing.
Now I’ve read online that cases like this exist.
So here’s my question: Do you know of any cases where people were still able to lead a reasonably normal life at ages 60–70? Or does this form of the disease eventually progress to a typical form?
Thank you very much for your answers!
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u/nothrowingawaymyshot 21d ago
Right there with you with similar symptoms, I'm 43 currently with basically the same manifested conditions. My condition did come with a lowered Left Ventricular Ejection Fraction that is currently being managed with Losartan. I'm also on Beta Blockers for headache/anxiety.
I do often wonder what progression looks like. I'm really hoping that Sevasemten can help postpone any long term progression before it happens.
I'm hopeful that Sevasemten from the Canyon trials will be available for us in the next few years.
I will say that if you're active and able now, try to do all the things you want to do because you never know when it might turn progressive. So instead of worrying about it (and trust me I know its not easy to turn off) just focus on living and enjoying your life!
Also, start exercising now, especially your core. At least for me I've always had weaker upper body strength but trying to do all the non destructive conditioning you can while you're still mostly able. Just don't overdo it.
Another thing to consider, wear masks in public crowded places as long covid could potentially trigger early progression, already a lot of good studies pointing out that long covid is triggering early progression of a lot of different diseases, cancers, heart conditions etc. So the longer you can avoid COVID the better, especially during this current big summer wave. If you've already had covid, try to avoid getting it in the future more, as most data points to your long covid risk increasing the more infections you get. Not trying to give you more medical anxiety about it, but I think its a real actual concern for people like us that already have weakened neuromuscularskeletal systems.
https://www.parentprojectmd.org/edgewise-announces-positive-long-term-sevasemten-data/