Yogaman
12-01-2008, 03:02 PM
Hello
Can someone please advise me if blood circulation is one of the symptoms of LGMD.
I am 44yrs with LGMD, but I don't know what type it is. I use a wheelchair to get out and about. I am still able to walk but need a riser to get me to a standing position.
For the last couple of years I have been experiencing circulation problems, especially in my arms. This only happens during rest periods in bed and whilst a sleep. I now find that I have virtually lost all the power in my grip and sometimes find it really difficult to even hold a cup of tea.
I was wondering if there’s anyone else who is or experienced the same and if there is something I can to alleviate this problem. It almost feels as though I don't have enough blood supply within me to supply all my body (that’s the best I can explain what I’m experiencing).
I have found CoQ10 quite helpful in aiding my fatigue but I feel like I’m loosing my strength in my arms. I feel so afraid of loosing the use off my arms and don't really know what I can do now. I have spoken to the GP and specialist in regards to this and test carried out etc but they have been unable to find anything.
I have been working all my life and continue to do so regardless, but I feel that soon I will have to leave on health grounds. I don’t want to give up work and want to continue but feel I will soon have no choice.
I am a single parent and have a daughter of 15 and son who is 14. They are very supportive towards me but I don't want to be totally dependant on them. They are still at school and have a long way to go with there studies etc.
I want to continue supporting them as long as I can but i feel that I am now loosing my battle.
I need some advise, please help:(
Regards
Max
Can someone please advise me if blood circulation is one of the symptoms of LGMD.
I am 44yrs with LGMD, but I don't know what type it is. I use a wheelchair to get out and about. I am still able to walk but need a riser to get me to a standing position.
For the last couple of years I have been experiencing circulation problems, especially in my arms. This only happens during rest periods in bed and whilst a sleep. I now find that I have virtually lost all the power in my grip and sometimes find it really difficult to even hold a cup of tea.
I was wondering if there’s anyone else who is or experienced the same and if there is something I can to alleviate this problem. It almost feels as though I don't have enough blood supply within me to supply all my body (that’s the best I can explain what I’m experiencing).
I have found CoQ10 quite helpful in aiding my fatigue but I feel like I’m loosing my strength in my arms. I feel so afraid of loosing the use off my arms and don't really know what I can do now. I have spoken to the GP and specialist in regards to this and test carried out etc but they have been unable to find anything.
I have been working all my life and continue to do so regardless, but I feel that soon I will have to leave on health grounds. I don’t want to give up work and want to continue but feel I will soon have no choice.
I am a single parent and have a daughter of 15 and son who is 14. They are very supportive towards me but I don't want to be totally dependant on them. They are still at school and have a long way to go with there studies etc.
I want to continue supporting them as long as I can but i feel that I am now loosing my battle.
I need some advise, please help:(
Regards
Max
Sponsor
peachiemom
12-01-2008, 03:19 PM
My arms would go numb and I had a hard time holding onto things. Some tests revealed that my nerve that goes from your neck down to your hands was trapped in my elbow. I recently had surgery to transpose my nerve and everything is better. Not a quick recovery. be prepared, but worth it. It gets trapped in there, because I don't have the opportunity to straighten my arms much. They are always bent, sitting in my chair, in bed I tend to draw them into myself. This is bad for the nerve and causes it to get caught in the elbow area. Talk to your doctor about tests to see if you have nerve function in your hands. A carpel tunnel surgen fixed me up.
Jodie
Jodie
Yogaman
12-02-2008, 09:21 AM
Hi
Thank you your reply, may I ask how long the recovery period.
Regards
Max
Thank you your reply, may I ask how long the recovery period.
Regards
Max
michigani
12-02-2008, 06:00 PM
Max, hi.
You sound JUST like me! We have similar stories. I am 47 with an unknown type of LGMD. I've tested negative for approx. 12 dystrophies. Left click my username "michigani" and you can see my many posts.
I can barely walk, I use a cane but mostly a scooter. My arms are much better and I fear losing them. Chairs and stairs are VERY hard and I can only conquer those with the use of my arms. I'd say my legs have 10% strength and arms have 50% strength. I have 2 daughters 16 & 19 who are helpful. Our only difference is a have a wife who is still understanding and helpful. She mows, shovels, rakes, etc. i do the dishes, cooking and dusting. It works well. I feel for you not having as much help as I probably do. (Maybe I'm mistaken). Best of luck. Write to me via this thread if you want to talk some more. I think we are very similar. PS - Healthboards does not allow personal contact.
Mark
PPS - I don't really have circulation problems. Just HBP like many MD patients.
You sound JUST like me! We have similar stories. I am 47 with an unknown type of LGMD. I've tested negative for approx. 12 dystrophies. Left click my username "michigani" and you can see my many posts.
I can barely walk, I use a cane but mostly a scooter. My arms are much better and I fear losing them. Chairs and stairs are VERY hard and I can only conquer those with the use of my arms. I'd say my legs have 10% strength and arms have 50% strength. I have 2 daughters 16 & 19 who are helpful. Our only difference is a have a wife who is still understanding and helpful. She mows, shovels, rakes, etc. i do the dishes, cooking and dusting. It works well. I feel for you not having as much help as I probably do. (Maybe I'm mistaken). Best of luck. Write to me via this thread if you want to talk some more. I think we are very similar. PS - Healthboards does not allow personal contact.
Mark
PPS - I don't really have circulation problems. Just HBP like many MD patients.
Yogaman
12-04-2008, 01:42 PM
Mark
Many Thanks, I’ve just read some of your post and you case is similar to mine. I would say that the strength in my legs and arms are similar to yours. I can’t climb the stairs and have not done so for the last 3 years due to frequent falls and now have the fear of even trying.
I still manage to drive via a push pull hand control lever for the breaking and accelerating and on long journeys the use of cruise control.
I have not yet looked at getting myself a scooter or powered wheelchair but I feel I should start looking for something that will be light on my arms.
Jodie in post 2 on this tread has pointed me in the right direction as my symptoms are similar as to what she describes with regards to my circulation which I will take up with my specialist hopefully soon.
Regards
Max
Many Thanks, I’ve just read some of your post and you case is similar to mine. I would say that the strength in my legs and arms are similar to yours. I can’t climb the stairs and have not done so for the last 3 years due to frequent falls and now have the fear of even trying.
I still manage to drive via a push pull hand control lever for the breaking and accelerating and on long journeys the use of cruise control.
I have not yet looked at getting myself a scooter or powered wheelchair but I feel I should start looking for something that will be light on my arms.
Jodie in post 2 on this tread has pointed me in the right direction as my symptoms are similar as to what she describes with regards to my circulation which I will take up with my specialist hopefully soon.
Regards
Max