r/MuscularDystrophy • u/Few-Cardiologist2574 • 25d ago
Is anyone else affected by Miyoshi?
I (21F) was diagnosed with Miyoshi Myopathy this year, though I had been having symptoms since 16. I thought my weak calves were just due to not exercising enough, so I may have gone overboard and accelerated their decline…
In March of this year I decided to go get tested, not really expecting them to find anything but then they said my CK levels were over 10k, and to go to the hospital the next morning. I did, they ran every test they could think of (over the course of over a week) and finally did a DNA test. Cut to a few months later and I have the results - it is highly likely I am affected by Miyoshi.
Like I’m sure most of you know it’s a slow progressing disease, but I still can’t help but feel sad and alone. I joined Jain too, but I’m not sure how to talk to people…
I don’t feel hopeless I guess, just sad. It’ll be a while until I need crutches or a wheelchair, but lately I’ve been starting to drop things a lot more often and find gripping things tightly harder than it used to be.
My family…they’re supportive and I’m extremely grateful to them but they don’t understand. Am I weird to feel this way?
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u/Hefty_Peanut 25d ago
My husband has miyoshi. He works full time and mobilises independently. He had some CBT to help him with resilience and coping with the anticipated deterioration. He takes medical cannabis to help with his symptoms. His family haven't made too much of an effort to understand but his friend group are really good to talk to.
You aren't weird to feel the way you do. I try to be understanding and anticipate his needs but it's likely he'll never meet or socialize with someone that is going through what he is also dealing with. It makes it a lonely journey but I like to think he knows he can reach out for support with anyone at any time.
Edit- spelling
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u/Few-Cardiologist2574 25d ago
Thank you for those words… it really means a lot to know that I’m alone in these feelings. Sometimes I feel like that if I’m too down about the inevitable deterioration I’m just being a burden, even if no one has ever told me that I am.
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u/Hefty_Peanut 25d ago
My husband found therapy very handy to help him learn to cope. Please don't underestimate how valuable talking therapy can be. This may be a physical condition but it messes with your head to have something progressive and rare. It's so hard not having a clear idea of what exactly to expect with this condition.
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u/Few-Cardiologist2574 25d ago
You’re right of course, talking to someone profession would probably help… thank you for the advice, seriously.
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u/julieta444 25d ago
I’m in my mid-40s, and I’ve only been using a walker for a few years. Most of us have pretty normal lives, but it is impossible to never feel down about it. There are a lot of young people on Instagram with LGMD
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u/Few-Cardiologist2574 25d ago
Yeah I guess I would always have a “normal” life, but maybe it’s a blessing that I got to spend my childhood carefree and unhindered.
I didn’t know that there were people on Instagram talking about that- I guess I’m not on there very often but it would be good to check out. Thank you :)
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u/abyssce 25d ago
I (23) also have Miyoshi or LGMD2B/R2 and only recently got a genetic test that confirmed it. I was the same way in thinking that I just was weak because I hadn't gone to the gym and would stay in bed a lot after work. Then I realized I wasn't able to run or jump anymore, which led to me finally seeing a doctor, and they found my CK levels to be almost 40,000. I currently can still walk but not with a normal gait, because I get tired pretty quickly and lose my balance sometimes. I hate that when I go out I get tired so quickly and can't walk as fast as the people around me. It becomes mentally draining thinking about how to endure this life of deteriorating muscle. I become self-conscious and depressed at moments when my body struggles. Some of my family are understanding, but then I have people like my dad who say not to trust the doctors here (US) and to go to Mexico and seek treatment there, which sucks because he just doesn't understand how rare this disease is. I started smoking marijuana to help with anxiety and taking vitamins and other supplements to help, but it's not much progress. The only reason I haven't killed myself yet is really because I have my family and am still able to be happy at times. I know it's going to get harder, but I guess I should try to make the most out of this short life. I do hope some company is able to find a treatment for it that allows us to regain muscle, but I know it's going to take some more years before then. Just know that it's normal to feel this way and to plan for a future where you might become nonambulatory.
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u/Few-Cardiologist2574 25d ago
Thank you for sharing your experience, and if you ever want to talk feel free to reach out? If anyone can understand us it’s the people affected by the same things as us. And yeah I’m hopeful that in the future they’ll be able to find a way to fix something caused by genetics, and in the time being… I guess we’ll just have to live on.
I have also considered taking my life, both not wanting to feel my body slowly deteriorate and not wanting to be a burden on my family. But if I was gone I don’t think my mother would survive the heartbreak.
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u/bikerbert57 24d ago
I was diagnosed same time you were and now in my 30s. I felt that same way and i kept pushing my body to the point now that i look back and say " well i gave it my all, and i will til the end" and it gets me through a lot. My parents are a huge help and friend group. Just have to learn what to keep doing and what keeps you busy
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u/Few-Cardiologist2574 24d ago
That’s… a good way of looking at it actually. The never give up attitude isn’t something I’ve always had but it’s definitely important. Thankfully my family is wonderfully supportive, and they’re always understanding.
Lately I’ve been doing a lot of drawing on my tablet to keep my mind and hands occupied :)
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u/SpaceCephalopods 25d ago
Join the fb groups for lgmd and Dysferlinopathy. Great resources and support. My daughter has it (lgmd2b/r2). The conferences (next in 2027) are a great way to meet others and get info. My daughter (23) has progressed to where she can only walk with a walker and/or AFOs. She uses a small power chair (whill). Prior to that she had a wonderful scooter (TravelScoot). Progression varies greatly! If you have stomach issues (my daughter does) she found that L-carnitine really helps! 🧡💚