... It seems that a recent clinical trial has gone well for a gene therapy treatment for LGMD, in which the treatment appears not only safe, without side affects, but also effective in producing the missing proteins for that particular type of MD. ... (1 replies)
... since knowing exactly what type of MD is not going to change treatment or management plans. My doctor respects this decision. ... (9 replies)
... Thanks for your reply, Mark. My computer didn't indicate that I had any replys, but I checked and yours was there!
I don't think I have the "rippling muscle" symptoms, although I have had some cramping in the calves in the past. I think symptoms can come and go - and then come back again with these muscle conditions. I was a little perplexed that LGMD1C is "childhood... (8 replies)
... Hi Mark!
I'm so glad that you replied to my post. I was hoping you would - I've read a lot of your posts and your situation sounds so familiar!
It's great that you stay so active in your diagnosis and treatment - that's something we are in the process of doing. It's hard though as sometimes I feel like all we run into are brick walls. It's very hard for me as I feel... (7 replies)
... Hi tcusick,
I can't even begin to explain how much I understand. The only difference is, I AM the husband with LGMD. I could easily write a 2000 word reply telling you about my 8 or 9 negative tests, biopsies, staining, trips to Bethesda Maryland from Michigan and the countless emails and letters I've written to doctors and researchers all over the country.
I'm a 45 year... (7 replies)
... I my self is a patient of LGMD. I am from india (sorry for BAD english)
i got dignosed at age of 18 with dutchen MD. but later changed to LGMD
i still walk with help of waker and work as web designer from my home pune india.
now my age is 25. normally doctors have very less info about muscular dystrophy
If you are in USA then visit near by muscular dystrophy... (6 replies)
... I wasn't aware of those rules, that's kinda lame. I hope you get treatment one day for LGMD, you're too cool to have a disability like this. ... (4 replies)
... e possibilities of cure with the advance technologies. But unfortunately... Also because that i am in this field, i understand the many years required to get the treatment into a clinical settings soon. ... (8 replies)
... I hope everyone is doing OK these days. It's been pretty quiet hear on the MD board. I'm getting along. My albuterol treatment still seems to be helping but of course the LGMD is progressive. ... (6 replies)
... I have LGMD and I'm 49 years old. There's been a small development. Read my "guinea pig" post from a few weeks ago. ... (12 replies)
... Girdle MD, like Mark. Exactly which LGMD I don't know, but have opted NOT to undergo more testing at this time since knowing won't change my treatment or prognosis that much. ... (5 replies)
... Girdle MD and over 70 types of MD total. LGMD has a classic symptom of weak upper legs, torso and shoulders or any one of these by themselves. As the muscles shrink the space gets filled with fat. ... (3 replies)
... I have finally been diagnosed with Inclusion body myositis. Symptoms are much the same as LGMD and there is no cure or treatment. ... (6 replies)
... Gayle I understand and feel your pain. I have an undiagnosed LGMD since age 41. Now I'm 47. ... (4 replies)
... nd and just went to the Nationwide Hospital in Columbus last week! I liked the Dr's and think that we will continue to follow up with them. I will continue her treatment here at Cleveland Clinic. ... (14 replies)
... My husband is 31 and was diagnosed almost two years ago with LGMD. Recently we were out at a chain family style Italian restaurant celebrating his birthday. My husband went to get out of his chair and fell - his legs just gave out on him as happens from time to time. The manager rushed over to our table and made a scene asking if he was okay. That embarassed him beyond... (3 replies)
... Is there any treatment for any subtypes? ... (22 replies)
... And last but not least...be proactive and involved in your treatment and diagnosis! You can only gain from it. ... (5 replies)