COLOGAL
09-09-2008, 12:17 PM
Hi, I'm New. I Was Diagnosed W/ An Undertermined Strain Of Lgmd A Couple Of Years Ago. I'm Now 46. I've Known In My Heart I Have It For Years As It Runs Heavy In My Family (father, Uncle And Cousin All Now Deceased). ..i Am Still Walking On My Own And Find My Biggest Struggles Are Fatigue And Lower Back (maybe Hip) Pain. I Am Really Struggling At Work ( I Only Work 5 Hrs A Day). Any Suggestions Out There? My Family Doc Suggested Pt Which I'm Trying To Find One In My Area.
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michigani
09-09-2008, 02:49 PM
Welcome Cologayle! Wow! Almost the same story with me.....47 years old, undiagnosed LGMD, my dad had it, I knew years before that I had it, then was finally diagnosed at 41 years old. We're still looking for that "naughty" gene that's causing all this. We know I have a Dysferlin deficiency but not enough to cause LGMD2B or Miyoshi Myopathy; those tested negative. We think the dysferlin problem is secondary and that my MD is caused by another unknown problem.
I can't stress enough, contact your local MDA clinic. The doctors there are neurologists that only treat MD. They are experts. My local clinic in Michigan has been a Godsend. Best of luck and remember this is the place to vent or ask questions. I've been posting here for years.
Mark
I can't stress enough, contact your local MDA clinic. The doctors there are neurologists that only treat MD. They are experts. My local clinic in Michigan has been a Godsend. Best of luck and remember this is the place to vent or ask questions. I've been posting here for years.
Mark
Madalot
09-13-2008, 09:17 AM
Hi Cologayle!!
As another semi-regular around here, I wanted to welcome you to the board. I'm sorry you have the need to be here, but you'll find people here sympathetic and understanding. Since many people here are adults suffering with some form of MD, you will have a place to get support, advice and understanding.
I won't go into details about my history, but in a nutshell, I was diagnosed in my late 30's. I had been a "weakling" all my life so to a degree, it was almost gratifying to have a medical reason why I was so weak. Almost. It's still a big problem, but we cope as best we can.
I worked as long as I could, then attempted to work part time. Even part time became too much for me and I stopped working in 2005. Because I had worked for a long time (since I was 16), I had enough credits to apply for and receive federal disability. So, that's how I make it now. I'd rather work, but have faced reality that I just cannot.
Anyway -- welcome and please feel free to post anytime with questions, comments, vents -- anything.
Kathy
As another semi-regular around here, I wanted to welcome you to the board. I'm sorry you have the need to be here, but you'll find people here sympathetic and understanding. Since many people here are adults suffering with some form of MD, you will have a place to get support, advice and understanding.
I won't go into details about my history, but in a nutshell, I was diagnosed in my late 30's. I had been a "weakling" all my life so to a degree, it was almost gratifying to have a medical reason why I was so weak. Almost. It's still a big problem, but we cope as best we can.
I worked as long as I could, then attempted to work part time. Even part time became too much for me and I stopped working in 2005. Because I had worked for a long time (since I was 16), I had enough credits to apply for and receive federal disability. So, that's how I make it now. I'd rather work, but have faced reality that I just cannot.
Anyway -- welcome and please feel free to post anytime with questions, comments, vents -- anything.
Kathy
COLOGAL
09-25-2008, 04:47 PM
Kathy, Thank You So Much!! I'm New To This Computor Stuff Also. Any How, This Is So Helpful For Me. Its Better Therepy Then The Councling My Md Special Suggested For My "denial Problem".
Thanks Again And God Bless.
Gayle
Thanks Again And God Bless.
Gayle
Madalot
09-26-2008, 08:06 AM
Gayle --
It makes me feel a little better to talk to people here that understand. There's really no one in my life that totally gets this. My husband is great and very supportive and he "gets" it as well as I could ever hope, but I really have no one to talk to other than the boards.
Post here whenever you wish and I know you'll get someone to just give you a cyberhug if you need it! Everyone here is really great.
Kathy
It makes me feel a little better to talk to people here that understand. There's really no one in my life that totally gets this. My husband is great and very supportive and he "gets" it as well as I could ever hope, but I really have no one to talk to other than the boards.
Post here whenever you wish and I know you'll get someone to just give you a cyberhug if you need it! Everyone here is really great.
Kathy