Jack
05-19-2002, 10:12 PM
I have either FSH or Limbgirdle MD (doctor isn't sure but believes FSH). There has never really been a treatment. I take creatine and vitamins. I also exercise a good bit, but not sure anything makes much difference. I would gladly try any "alternative" type of treatment.
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GaGa
06-28-2002, 08:00 PM
I have been diagnosed with Myoshi's Myopothy MD, a gene that was discovered in 1998. I have had this probably since I was about 10. I am now 58. My doctor is saying Myoshi's until some further research is done on two other genes. The good news is that my affected areas are feet and the back of my calves. What has saved me, Ithink, and so does the doctor, is Yoga. I need to strengthen all my muscles and especially work on the tendons and ligaments of my feet and calves. I have no muscle in my calves. He also told me to take creatine. How do you take it? I also only eat fish and chicken with no hormones, antibiotics or other stuff in them. Same with eggs. I also eat protein at three meals. Lots of fruit and veggies. no processed food and no fast food.
What symptons do you have? GaGa
What symptons do you have? GaGa
praveena
07-02-2002, 08:40 PM
Hi,
I have same type of distrophy. What type of Yoga excerise you do?
Thanks in Advance
I have same type of distrophy. What type of Yoga excerise you do?
Thanks in Advance
BlueDestin146
02-04-2003, 02:06 PM
I have miyoshi Myopathy as well, anyone want to post here with me..
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deb4ever99
06-26-2005, 02:52 PM
i was diagnosed as having muscle myopothy. i had the entire body electric test and two muscle biopsies. my dr. seemed very vague about it only saying it was very rare and apparantly i had it cause i have taken too many rx drugs in my life being born with a dislocated hip that soon marrowed away leaving a horrible limp and tremendous pain i was given prescription pain meds from the third grade on but walked when they said i wouldn't. about ten years ago i had to go on a cane as the pain and limp were both to great to cope with. i have worked all my life mosttimes two jobs but about a year and a half ago i thought i was having a heart attack and called 911 they treated me as if i was a druggie when i tried to tell them i was only taking what was prescribed morphine and lortabs. three further trips to the hospital in ambulances and they diagnosed the myopothy and the fact i was totally deprived of magnesium. i am so tired now i can barely do anything and when i do i have terrible all over pain. i have had espisodes where only a certain part of my muscles seem like they are not even there. i have fevers and horrible cramps and am alsmot useless. is there anyhope for this to improve or will it only worsen. i am not finding many sites that explain it online. the first i ever heard about it was when i was diagnosed. my neurologist the one who diagnosed it gave me just soma to help and it did not, and my med bill is already 500 a month so swhat doesn;t work i no longer buy. any site suggestions or help anyone can be to let me better understand what is happening to me i am just 49 and have always done for myself even with a severe handicapp. help???
michigani
06-30-2005, 11:25 AM
Jack,
I was originally diagnosed with FSH. I disagreed and went to MDA. I was rediagnosed with Limb Girdle (LGMD). How strange. The two dystrophies are totally different yet this indetermined diagnosis happened to both of us. I have a Dysferlin Protein deficiency. This causes BOTH Myioshi Myopathy and LGMD with different symptoms. Biopsies and DNA testing can help diagnose your specific disorder. Best of luck.
Sincerely,
Mark
I was originally diagnosed with FSH. I disagreed and went to MDA. I was rediagnosed with Limb Girdle (LGMD). How strange. The two dystrophies are totally different yet this indetermined diagnosis happened to both of us. I have a Dysferlin Protein deficiency. This causes BOTH Myioshi Myopathy and LGMD with different symptoms. Biopsies and DNA testing can help diagnose your specific disorder. Best of luck.
Sincerely,
Mark
michigani
06-30-2005, 11:35 AM
GaGa,
I too have a Dysferlin deficiency. But mine has caused Limb Girdle type 2B rather than Myioshi Myopathy. Believe it or not my calves and hamstrings are almost unaffected. I can walk on my toes. But my shin muscles are non-existent. Can you stand on your heals? My feet just hang. And my quadriceps are shot. . . . nothing. I can't get out of a chair or even get up a 6 inch curb.
What has it done to your arms? My biceps are maybe 80% what they should be but my triceps are down to about 10-20% normal strength.
Also to get back to Jack, in most cases of MD, muscle cannot be replaced. Talk to your doctor about this, but I limit my excersice to staying limber and active. But don't push until you hurt. You may damage muscle cells that won't be replaced.
Good Luck everyone,
Mark
I too have a Dysferlin deficiency. But mine has caused Limb Girdle type 2B rather than Myioshi Myopathy. Believe it or not my calves and hamstrings are almost unaffected. I can walk on my toes. But my shin muscles are non-existent. Can you stand on your heals? My feet just hang. And my quadriceps are shot. . . . nothing. I can't get out of a chair or even get up a 6 inch curb.
What has it done to your arms? My biceps are maybe 80% what they should be but my triceps are down to about 10-20% normal strength.
Also to get back to Jack, in most cases of MD, muscle cannot be replaced. Talk to your doctor about this, but I limit my excersice to staying limber and active. But don't push until you hurt. You may damage muscle cells that won't be replaced.
Good Luck everyone,
Mark