does anyone have FSH OR LIMB GIRDLE MD? - Muscular Dystrophy Message Board

beagle · 01-14-2004, 06:38 PM

Hi everyone!

I have FSH MD . I have lost a lot of strength in my arms and wrists.
I also have had trouble with my hips. I was wondering does any one else have this also. I thought it would only affect the upper body. I have been trying to talk to people who have md but I was not getting anywhere.
Does anyone go to physical therapy? Would love to hear from anyone

pcfshhunter · 01-15-2004, 01:05 PM

beagle,

I was diagnosed w/ FSH in my early teens. Now 40. Weak upper body but legs are still pretty sound. Legs aren't quite as strong as they were but not to bad off. Beagle how old are you? Male or Female? Does anyone else in your family have FSH? I'm in upstate NY... you? Any hobies? Im an avid outdoors (fish, hunt and dogs). If you have a particular question... ask away. I'm not a doctor, just someone who has lived with FSH and watched many of my muscules disappear for the last 30 years. Hey... but at least were here to @itch about it. Keep smiling.

A fellow FSHer,
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!

beagle · 01-15-2004, 05:20 PM

Quote:

Originally Posted by pcfshhunter

beagle,

I was diagnosed w/ FSH in my early teens. Now 40. Weak upper body but legs are still pretty sound. Legs aren't quite as strong as they were but not to bad off. Beagle how old are you? Male or Female? Does anyone else in your family have FSH? I'm in upstate NY... you? Any hobies? Im an avid outdoors (fish, hunt and dogs). If you have a particular question... ask away. I'm not a doctor, just someone who has lived with FSH and watched many of my muscules disappear for the last 30 years. Hey... but at least were here to @itch about it. Keep smiling.

A fellow FSHer,
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!

pcfshhunter,

I am in my forties also . I am a female. None of my siblings were tested so I do not know about them and my parents passed away. What about you?
Alot of my hobbies I can not do like I want toanymore. tennis, basketball, gardening. I have a dog. I love animals. What about you?
MY legs are not as weak as my left hip. I am having a hard time dealing with the loss of muscle. Do you go to physcial therapy? I love to be outside also, but not in this frigid weather .

pcfshhunter · 01-20-2004, 02:33 PM

Hi beagle,
Excellent... Im also a dog lover! My wife and I have 2 English Springer Spaniels.
Are u married/kids? My wife and I decided not to have children as I would freak if I gave them my FSH. After I was diagnosed my family was screened and I found out my dad had given it to me. Where is home? Are you near NY? As far as hobbies, I love the outdoors. Hiking (not as far as before), camping, fishing, hunting. As far as PT, I have a 6-person hot tub in the back yard which helps a lot. All more formal PT has been real frustrating. Heres my work email: [removed] send me an email

Keep smilin'
pcfshhunter
-------
take a physically challenged person huntin, you'll both finish the day smilin'!

lisa45169 · 02-07-2004, 10:20 PM

COMIC SANS MS5
Hello,
I also suffer from FSH MD. I can not get my arms above my head, have pain in my arms and shoulders. I also have great pain in my back. I have started to stumble and have even fallen. I am only 34 years old. I can not do much of anything that requires use of my arms. My father was diagoinsed back in 1981. It is a very hard thing to deal with. Are you still able to work?