TAC54
06-11-2008, 05:49 PM
Hi, I'm new to the board but old to the disease, FSH MD, that is. I'm 54 and still kickin'. Wanted to ask if any of you take BP med. I take COZAAR - I read that there is a side effect that has helped Dueschenes MD patients - just a trial though - in 20 boys and mice! Anyway, since I have been on this med (1 1/2 yrs) I have had little or no muscle spasms like I used to. I still am getting weaker - right thigh is losing muscle mass and I have to "think" when I walk. I still walk but cannot run any longer. I work every day but it is more of an effort to dress for work. And because I'm just plain tired these days, I take fresh bee pollen and royal jelly for energy. Also just found out that I have stage 3 kidney disease from the proteins that break down from muscles - guess this is what eventually happens. Egads! What's next - thank God I still have my sense of humor!
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splivalo
06-12-2008, 08:56 AM
Hello TAC, my name is Stipe (33) and I am from Croatia. I have LGMD2A - calpainopathy. As Elton John said it in a song " I'm still standing" :) but I have difficulties walking and my balance is not so good (this part is not from Elton's song). I have read on some page (I cant post link because webmaster will kick me out - again) that some combination of vitamins could be helpful in some muscle wasting diseases..try search "doctoryourself" > you should find the page - there is a link Muscular dystrophy on that page ..I have not try this vitamin therapy myself but here is some quotation;
"a liquid B-complex supplement, 1/2 tsp 2X (two times) a day
Flax oil, 1/2 tsp 2X a day
CoQ10 (30 mg), 1/2 capsule 2X a day
Wheat germ oil, 1/2 tsp 1X a day
Vitamin A (10,000 IU), 1 capsule 1X a day
Vitamin E (200 IU), 1 capsule 2X a day
60 mcg (micrograms) selenium, 1X a day.
Vitamin C (500 mg), 1/2 tablet crushed 2 X day
Magnesium maleate, (625 mg.) 1/4 tsp. 1 X day
Lecithin (600 mg), 1/2 capsule 2 X day
Evening primrose oil: a few drops a day
"
regards
stipe
"a liquid B-complex supplement, 1/2 tsp 2X (two times) a day
Flax oil, 1/2 tsp 2X a day
CoQ10 (30 mg), 1/2 capsule 2X a day
Wheat germ oil, 1/2 tsp 1X a day
Vitamin A (10,000 IU), 1 capsule 1X a day
Vitamin E (200 IU), 1 capsule 2X a day
60 mcg (micrograms) selenium, 1X a day.
Vitamin C (500 mg), 1/2 tablet crushed 2 X day
Magnesium maleate, (625 mg.) 1/4 tsp. 1 X day
Lecithin (600 mg), 1/2 capsule 2 X day
Evening primrose oil: a few drops a day
"
regards
stipe