Miyoshi Myopathy - Muscular Dystrophy Message Board

b5sense · 03-24-2004, 11:28 AM

i was diagnosed with miyoshi myopathy earlier this year and now have no idea what to do. i feel very alone and i don't like any of the doctor's that i've seen. i would just love to hear that there is someone else out there that has this and maybe we can share some experiences. my calves are very small and i can't stand on my toes or walk on my heels. i get tired very easily, but i always just thought that's what everybody felt like after a day of work/school/sports/whatever. i just want to know what to expect and what i can do now. i feel like i have to make up my own rules about all this, but i have no idea what these rules should be. i would love to hear from anybody who has this dystrophy or know someone that does. i can't stop staring at peoples calf muscles, and they all seem to be huge. very discouraging.

Amglo · 08-02-2004, 11:37 PM

I have had Miyoshi for about 7-8 years now, I have the same symptoms as you. Give some additional info, where do you live (there is a good Dr. in CA) & how old are you. I am 51 and I seem to be stableized, of course I cannot walk long distances or run but I manage just fine. Drop me a line to my private [ removed - use this board anonymously only ]. I will be happy to answer any questions that I can [ use this board anonymously only - do not solicit private contact ]
Regards,

[ removed - use this board anonymously only - do not post your real name ]

b5sense · 08-19-2004, 08:34 AM

wow. i haven't checked this site for a long time because it didsn't seem like anybody was writing back. it was good to hear from you. well...i'm 25 years old and they say i've had this since i was fourteen. my left leg is smaller than my right, but they're both pretty small. my doctor has me using a cane if i'm going to be walking long distances, which is pretty hard to get used to. since i don't know what to expect in the years to come, it's kind of hard to plan for the future, but i'm trying to wrap my mind around all of this. i'm glad to hear that you're doing well with your diagnosis. it gives me some hope for myself. thanks for writing back. [ removed ] thanks again,

Bluedestin · 03-20-2005, 01:04 AM

Hello,
I first discovered that my legs were getting weak at around age 17 or 18. I went through many tests and was told that I have Miyoshi Myopathy. I'm glad to meet someone that is going through the same problem that I'm having. It's been really tough dealing with it because I remember what it used to be like to run and jump and climb stairs easy. Just watching my friends around me do things with their legs make me feel depressed at times. I'm dealing with it a lot better than I was when I found out about it though and I think i'm slowly learning to live with it. I was given toe-up braces (I think that is what they called them). They work great! I'm able to walk fairly well with them on. If you don't have them, I think you should look into it. well, I guess thats all for now.

dkbladez · 03-26-2005, 09:25 AM

Hi all,
I was just passing through

I really don't know where I fit in these post so I will just say hi. I had been posting on the LGMD threads because that sound like what I have. I have been having a hard time finding a doctor. My reg.doctor thought I had rheumatoid arthritis. My neurologist says that I have a myopathy after doing a emg test(?) the one of with the electrical shocks. I finally have an appointment at the muccle clinic in April so hopefully someone will tell me what I have. What are your symptoms? I don'tt know if my calves or too big or small but I tire easily, having difficulty going up steps and on any kind of curb and getting up from any low chair or position. I'm 32 now, I think I first started having symptoms 7 years ago.
Good luck to all.

Shellette