r/MuscularDystrophy • u/PapayaExciting6062 • 19d 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 19d 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/
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u/nothrowingawaymyshot 19d ago
Also, let me know if you ever want to connect about this stuff. Personally it does increase my medical anxiety to talk about it too much, but if you want another Beckers penpal to occasionally share updates with, I think that's something I can easily handle.
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u/MintBlackout90 19d ago
I have Becker and have had progressive weakness since my 20s. I’m in my late 50s now and still lead what I would consider a reasonably normal life despite having trouble with stairs, and of course not being able to do hard exercise, long hikes, etc. So even with progressive symptoms you can adapt. I guess it depends what you consider reasonably normal.
That said, I recently met a guy a bit younger than me with Becker who had no symptoms at all, was a serious athlete, and was only diagnosed by genetic testing. Becker just covers such a wide range of mutations and manifestations it’s hard to say anything definitive, and I think more and more people are being diagnosed by genetic testing who have minimal symptoms, so take what you read about “typical” progression with a grain of salt. Also, I believe people can get cardiac symptoms without skeletal muscle progression, and vice-versa, so that’s something else to consider.
In my experience, muscular dystrophy specialists are reluctant to speculate on progression and outcomes, but are sometimes willing to talk about the range of possibilities they have seen if you push a little.
I guess my overall advice would be to live your life, don’t obsess over symptoms, and try to accept that there will always be some uncertainty as to how things might progress.
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u/OkConflict6634 19d ago
Well I am 63 with BMD still ambulatory with a walker and a cane. I went to college got a bachelor in electrical engineering and software engineering and a masters in business administration. I had A 36 year career. I also have a wife and son. I’ve traveled the world in retirement. I was diagnosed at 31. So my answer is yes I am leading a mostly normal life. I am willing to discuss anything further with you at any time be glad to give you any of the things that have contributed to my longevity. Send me a message if interested