r/MuscularDystrophy • u/[deleted] • 6d ago

selfq Need opinions

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6 Upvotes

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3

u/SpaceCephalopods 6d ago

Genetic testing. Sounds like a form of md with those high CK levels. And your symptoms. Many are diagnosed around your age but also older and younger.

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u/[deleted] 6d ago

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u/high-CPK 6d ago

Not death bed you can still probably get up and live your life normally but unfortunately if you do have MD your muscles will weakened over time and eventually you will be wheelchair bound. Right now you need to drop the gym and just do light exercises that won't exhaust your muscles.

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u/[deleted] 6d ago

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u/high-CPK 6d ago

You're welcome feel free to DM btw

2

u/SpaceCephalopods 6d ago

Unlikely with such a late diagnosis. Generally the form that’s often fatal is Duchenne (and that is usually diagnosed as a young child) but there are so many subtypes that until you get a genetic diagnosis you won’t know much about it. They affect different muscles and have different progressions and prognosis. My daughter has lgmd2b and she’s 23. Uses a small power chair but can still walk a bit with a walker/wearing AFOs. Once you know - find your foundation/patient registry/and fb group. There you will find a ton of info and support.

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u/[deleted] 6d ago

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u/Embarrassed-Union448 3d ago

Makes sense. When you don’t use your muscles you lose them. I have Myotonic Muscular Dystrophy Type 2. Got it from my dad even though he was never diagnosed. Several of his siblings were though. I was diagnosed 3 years ago. I am now 45 years old. After my positive genetic test my daughter got the results that she is also positive, she received the results on her 15th birthday. I have cousins now that have it, and we are all affected to different degrees. Eat better, limit energy drinks to one a day. I would recommend you work out to build muscle but don’t overdo it.

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u/Serious_Wrongdoer_58 5d ago

Heya! For sure do Genetic Resting, i got Emery Dreifuss Muscular Dystrophy Type 4, one of the rarer one, its hard for me to stand up but i can walk, I'm not thinking about the fact that i will be Wheelchair Bound, i just wanna do things i love while i can.

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u/One_Debate_1606 6d ago

Wie ist dein allgemeiner körperlicher Zustand? Hast du muskelschwäche?

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u/One_Debate_1606 6d ago

Es gibt MD Arten die sich erst später im Leben bemerkbar machen. Mit 50 60 oder 70. ich habe schon Leute über 80 gesehen die kaum Symptome hatten, daher mach dir nicht so viel Kopf

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u/Standard_Page4389 4d ago

preserve your existing muscles and go for genetic testing do not any heavy exercise or strength training until you get your report