Hey all! Was hoping to get some suggestions from a few folks who might be experiencing what I am. I am a RN of 26 years, and as many of you know, as you age with MMD, some folks experience more difficulties with exhaustion long before the day is over. I have been taking one over the counter caffiene pill to help, but this doesn't seem to be working as the day wears on. Can anyone here offer some insight to how they manage /sustain/boost their energy level in the early to late afternoon? Thanks in advance and appreciate your time. bev

Hello, My name is Sue and I have a son that has mmd1, and my youngest son Justin died 5 years ago, we didn't know that he had mmd1, he had heart issues, but had shown no muscle weakness, so they didn't know to test for muscular dystrophy. Then our older son Jamie was showing weakness in his hands, so then he was tested and now has a difibulater, pace maker. I was hoping to get him involved with some type of support group, but as of now, he says that he is not interested.

My name is Kali. I am 25 and was diagnoised with MMD at age 17. Just wanted to connect with people my age with the same disease.

Hello...We had appt at Clinic yesterday for our little one, he's 5, and told we should seriously consider surgery for hip realignment and heel cord adjustment in the next 6-9 months. Has anyone had these done you know of and how did they turn out? Aside from the recovery discomforts, what other things should we expect? I guess one of my fears is that he's only recently started standing alone (with braces), only for a minute or so but more and more often and that after surgery/ recovery he can't/won't try. He also has a hydrocephalic shunt and asthma so having him put to sleep really scares me. He still doesn't speak (chatters alot though) so he can't tell us if he hurts or just having a bad day. I know I should of asked alot of this yesterday at clinic but was so stunned (I thought he was doing really great) that my mind went blank. Any advice would be greatly appreciated.

Hello...I haven't been diagnosed with MMD, but I suspect that I may have it...
I have what I believe to be grip myotonia...I have had this for many years, but had a lot of difficulty explaining it to doctors, and therefore ended up in the rheumatology depot. for many years...A couple of years ago, I developed the same 'stiffness' in my jaw...Again, this was believed to be a manifestation of arthritis as I have many autoimmune markers...
In December of '08, I developed severe speech problems...I was referred to a neurologist who diagnosed me with MG and a thymoma...I had an operation to remove the tumour in July...
As I am still having issues with my hands that can't be explained my the MG diagnosis, I came across MMD and I seem to fit very nicely...I have mitral valve prolapse...I have recently developed 'skipping' heart beats...My sister also has a murmur...I have had digestive issues since I was very young...I was also born with a clubbed foot...My sister also complains about difficulties with swallowing, but is very much in denial....
I have developed prednisone-induced diabetes after only taking prednisone for 2-months...
Anywho, it certainly sucks to have so many diseases...I'm pretty sure that I have MMD and that it has come from my mom's side as she has a bit of the grip problem as well...
Sorry for all the info...I just needed the release...
If anyone can relate, please message me! I am going to see my neuro. soon and I don't know how to bring this up...It's so strange!
By the way, I am 26-years old and my sister is 31. Nicky