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Old 09-03-2011, 02:43 PM   #1
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Is anybody's LGMD spreading outward?

LGMD is basically a proximal (in proximity to the trunk) disease as opposed to distal (distant from the trunk). I've always felt that my weakest muscle groups were indeed my stomach, hips and shoulders. For years after I had great trouble climbing stairs and such things, I could still play guitar, wiggle my toes, etc. Now all of that is affected as well. My grip is deteriorating, I can't snap my fingers anymore, my toes are 90% "paralyzed", and worst of all I can no longer play guitar. I cannot hold down the chords. This sucks because I've played for years and enjoyed it despite the MD.

This is not a gripe session about my lost guitar playing. I'm just wondering if anyone else has noticed weakness of the hands and toes even with an LGMD diagnosis?

Mark

 
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Old 09-04-2011, 08:25 PM   #2
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Re: Is anybody's LGMD spreading outward?

I am not able to help out with the problem you are currently having, but I do hope someone can give you some answers, as you are always helping others so much.

 
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Old 09-06-2011, 12:46 PM   #3
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Re: Is anybody's LGMD spreading outward?

Mark

So sorry you are experiencing more problems. I have no problems with my toes but do notice some changes with my hands.Mostly lifting heavy dishes, gripping heavy glasses, loosening jar lids and things like that. But I knit, crochet, and cross stitch and do not see any problems there yet. I don't know what I would do if I couldn't do those anymore. They keep me sane.So I can imagine what it is like to loose the ability to play your guitar.

Stay positive and I hope someone out there has some good info for you.

Later Dreaman

 
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Old 02-06-2012, 03:39 AM   #4
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Re: Is anybody's LGMD spreading outward?

I have a rare type of LGMD called Miyoshi and I have the same symptoms. Most of my body is affected - my legs and arms are extremely thin with very little muscle. Are you able to stand on your toes? That was one of my first symptoms. Check out this type and see if it fits. I was originally diagnosed with quite a few diff. MD's then LGMD and finally after genetic testing Miyoshi was the difinitive diag. Of Miyoshi. Hope this helps.
Miyoshi patient

 
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Old 02-06-2012, 09:51 AM   #5
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Re: Is anybody's LGMD spreading outward?

Quote:
Originally Posted by Myoshi patient View Post
I have a rare type of LGMD called Miyoshi and I have the same symptoms. Most of my body is affected - my legs and arms are extremely thin with very little muscle. Are you able to stand on your toes? That was one of my first symptoms. Check out this type and see if it fits. I was originally diagnosed with quite a few diff. MD's then LGMD and finally after genetic testing Miyoshi was the difinitive diag. Of Miyoshi. Hope this helps.
Miyoshi patient
Thanks for the advice. Believe me! I've spent years studying every type of MD and talking with my neurologist about each one. I am very familiar with Miyoshi and LGMD2B. But I've been tested negative for those. Plus my calves are strong (I can stand I my toes. My shins are VERY weak). I'll keep searching for answers and best of luck to you as well !

Mark

 
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