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?