Hi Everyone, Greetings!! I was diagonised with dysferlinopathy patient in the year 2009. I have a lot of weakness in my leg muscles and terrible pain in my...
Hi Swapna, Welcome to the group. I apologize for not seeing and approving your post earlier. I've changed the permissions so that now you can post without...
Hi Swapna, I had quite a bit of knee pain when I was still able to walk. I think it was due to walking and standing with knees hyperextended for so many years....
Hi Swapna, I'm 36 now and athletic body. I've been having this problem for last 12 years. It has progressed over time resulting in successive muscle weakening...
Hi thereI actually posted on a facebook group recently about the same thing! I have painful knees and shoulder joints and now hips some times too. A lot of...
Hi everybody! I'm on this group since a long time (about 2 years), but I haven't make myself known yet and the reason is that I'm brazilian and I'm afraid my...
Hi there, Don't worry about your English! Post anyway!! Your opinion is important and if you have questions I'm sure we'd all like to help out and understand...
Hi there, I'm 29, I have knee pain, only when I abuse my body, walking too much. For me the best therapy is my Chinese acupuncturist, he is kind...
Hi again. It's been a long time since I've posted anything; but, am wondering who in our group with this MM..LMDGRL 2B has been living with this disease the...
Hi Deb, I'm a bit younger than you - I will be 60 in November. I was 28 when I was diagnosed with some kind of distal myopathy. I was later diagnosed with...
Hi, When I was 33 I was diagnosed with a muscle disease but did not get the LGMD diagnosis until a few years ago. I will be turning 60 next month. I, too,...
I am only 31 but it seems to be, those of us born later progress faster. I know several people about my age in powerchairs as I am (and have been for 4 years)...
I think the progression is determined by the different types of mutations. I too struggle with food and weight. I love food! Sent from my Droid Charge on...
Hello Friends, Ma dysferlin protein expression analysis need 2 b verified by a "Dysferlin Gene Analysis" in order 2 use it for disease management/risk...
Good Morning, My name is Kevin, and this is my first post/response here. I am 34, and was officially diagnosed with MM in 2003 when I was 25. Being a young...
Jenni... Ma condition is no different than u.....Albeit m using ordinary wheelchair 2 give ma arms a little exercise whatsoever.....However, what do u use 2...
Hi Kevin, Good 2 hear that...u r still mobile....However, I was diagnosed with MM in 2004 @ 19...but @ present, ma physical condition is very poor unlike...
My bed, toilet, showerchair are very close to the same height as my chair and I wear pants that slide easily plus a "slipsheet" (really just santeen...
Have u got ur powerchair manufactured as per ur requirement & specifications??? Does it's seat contain incline & decline facility?? Actually m planning 2...
Hello Everyone, My names Belinda I have had MD for ten years now. I was mobile until March 2010 when I developed deep vain thrombosis or in our non medical...
Hi, Sensa is an easy diet to follow google it. Msnbc endorsed it along with a few other major companies. -Belinda Sent from my iPhone ... Hi, Sensa is an easy...
I am looking for others with Miyoshi or LGMD 2b who may be of Acadian or Creole ancestry. I do know that there is a founder effect in certain endogamous...
... My knee pain started in my early teens. Often my knees pop out, which causes me to fall. It is very painful. Doctors have always seemed confused by this...
I just am having difficulties comprehending how, if I am dysferlin-absent, I was able to go as long as I have functioning fairly normally until very recently....
I tried to go bike riding and now I am in extreme pain and can barely walk. I have been using a cane and a walker. The bike riding was a rather absurd thing...
Hi there I have tried bike riding on a normal bike as well as on a exercise bike. My legs would always be and feel quite swollen afterwards. I also get a...
Hi Frnds, Excessive exercise or stretching of r weak muscles is not recommended for MD's.......I think, d main cause of rapid progression of ma disability...
