michigani
06-30-2005, 11:47 AM
Are any of my fellow MD sufferers plagued by fatigue? Just in the last year it seems I am suddenly stripped of all my endurance. If I try to rake leaves or carry a trash bag to the curb, within 30 seconds of starting the activity my legs are quivering and my heart is pounding. It's more frustrating than the weakness. I had to leave my job because of it but at least I was helping out around the house. Now even the little tasks are becoming impossible. Just venting I guess. People that care about me say they understand but I don't think anybody truly does until they are in this position. Regardless, I'm still upbeat and thankful that I still have my fine-motor skills.
Mark
Mark
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dkbladez
07-02-2005, 11:07 AM
Hello Again Mark,
Well maybe I can help you this time. I've been taking fish oil pills. I don't know if iit's just in my mind but I can definitely feel the difference when I don't take them. If I don't take them at night, I can't pull myself out of the bed in the morning. I get even more fatigue in the heat, so I try to stay out of the direct sunlight. I was wondering when was it worst in the summer or winter. Sometimes I think I'm in the denial but I too just keep going on until I can't anymore. I hope that helps.
Shellette
Well maybe I can help you this time. I've been taking fish oil pills. I don't know if iit's just in my mind but I can definitely feel the difference when I don't take them. If I don't take them at night, I can't pull myself out of the bed in the morning. I get even more fatigue in the heat, so I try to stay out of the direct sunlight. I was wondering when was it worst in the summer or winter. Sometimes I think I'm in the denial but I too just keep going on until I can't anymore. I hope that helps.
Shellette
michigani
07-28-2005, 11:20 PM
Shellette,
My MDA doctor is starting me on Coenzyme Q10, 150 mg. He thinks it will help with the energy. :bouncing: I'll keep you posted on the results.
Mark
My MDA doctor is starting me on Coenzyme Q10, 150 mg. He thinks it will help with the energy. :bouncing: I'll keep you posted on the results.
Mark
dkbladez
08-20-2005, 08:50 PM
Hi Mark,
How are the vitamins working? I can't wait until I see my doctor next month. I will have the big biopsy that day also.
Shellette
How are the vitamins working? I can't wait until I see my doctor next month. I will have the big biopsy that day also.
Shellette
michigani
08-21-2005, 12:06 PM
Hey Shellette!
Thanks for asking. I've been taking Coenzyme Q10 & Creatine for a couple weeks now. I believe it's making a tiny difference. It doesn't make me feel any stronger but it does seem to take away that achy-muscle feeling that makes me feel like I can't do another thing. I've sometimes felt that by 3:00 o'clock that I'm shot for the day and I have to collapse on the couch, but that's gotten better.
Good luck with the biopsy. It's singley the most important thing I had done. Many tests can be done on a tiny sample of tissue. Hopefully thay can tell you a lot afterwards. Keep us posted.
Mark
Thanks for asking. I've been taking Coenzyme Q10 & Creatine for a couple weeks now. I believe it's making a tiny difference. It doesn't make me feel any stronger but it does seem to take away that achy-muscle feeling that makes me feel like I can't do another thing. I've sometimes felt that by 3:00 o'clock that I'm shot for the day and I have to collapse on the couch, but that's gotten better.
Good luck with the biopsy. It's singley the most important thing I had done. Many tests can be done on a tiny sample of tissue. Hopefully thay can tell you a lot afterwards. Keep us posted.
Mark
dkbladez
09-11-2005, 08:46 PM
Hey Mark,
I'm just recovering from my biopsy. It went better than expected. I had more pain afterwards than during the procedure. The doctor had my results from my last blood test. She said my last CK last was normal but the other test had high numbers which showed inflammation. I guess she will have more answers for me later. I will keep you posted.
Thanks,
Shellette
I'm just recovering from my biopsy. It went better than expected. I had more pain afterwards than during the procedure. The doctor had my results from my last blood test. She said my last CK last was normal but the other test had high numbers which showed inflammation. I guess she will have more answers for me later. I will keep you posted.
Thanks,
Shellette
michigani
09-12-2005, 04:31 PM
Hi Shellette,
I was just wondering about you the other day. I know you said you were having your biopsy this month. I hope it shows something and can give you some answers. I'm glad it went well (mine was quite painful but I don't think the doctor numbed the muscle 100% . . .ouch!). Please let me know when you hear the results. I'm truly interested.
I'm am trying to get into a study at NIH (National Institute of Health) in Bethesda, MD near Washington. They are doing a heredity study on Neurological Disorders. They have a lot of resources at their disposal and hopefully they can give me something more definitive than "you have some form of LGMD". My MDA clinic doctor is awesome but I have symptoms he's never quite seen. I'll keep you posted as well. Best wishes . . . .
Mark :)
I was just wondering about you the other day. I know you said you were having your biopsy this month. I hope it shows something and can give you some answers. I'm glad it went well (mine was quite painful but I don't think the doctor numbed the muscle 100% . . .ouch!). Please let me know when you hear the results. I'm truly interested.
I'm am trying to get into a study at NIH (National Institute of Health) in Bethesda, MD near Washington. They are doing a heredity study on Neurological Disorders. They have a lot of resources at their disposal and hopefully they can give me something more definitive than "you have some form of LGMD". My MDA clinic doctor is awesome but I have symptoms he's never quite seen. I'll keep you posted as well. Best wishes . . . .
Mark :)