Comments on: About http://mcardlesdisease.org Information About McArdles Disease or Type V Glycogen Storage Disease Sun, 06 Jun 2010 18:04:01 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: S Reason http://mcardlesdisease.org/about/comment-page-1/#comment-153 S Reason Sat, 24 Jan 2009 20:38:06 +0000 http://mcardlesdisease.org/?page_id=2#comment-153 In Ontario, Canada ~ Dr. Tarnopolsky is the leading expert... In Ontario, Canada ~ Dr. Tarnopolsky is the leading expert…

]]> By: Site Admin http://mcardlesdisease.org/about/comment-page-1/#comment-87 Site Admin Wed, 26 Nov 2008 19:04:29 +0000 http://mcardlesdisease.org/?page_id=2#comment-87 Rahul, you should seek a physician who specializes in neuromuscular disease. The symptoms you described may be caused by any number of conditions. Click on the link "Experts on McArdle's Disease" to find doctors in the U.S. familiar with muscle disease. Otherwise, there is a link for the UK Association for GSD on the righthand side of this website. Other site contributors may know more about qualified physicians who may help you in other parts of the world, so feel free to post again. Best of luck. Rahul, you should seek a physician who specializes in neuromuscular disease. The symptoms you described may be caused by any number of conditions. Click on the link “Experts on McArdle’s Disease” to find doctors in the U.S. familiar with muscle disease. Otherwise, there is a link for the UK Association for GSD on the righthand side of this website. Other site contributors may know more about qualified physicians who may help you in other parts of the world, so feel free to post again. Best of luck.

]]> By: Rahul http://mcardlesdisease.org/about/comment-page-1/#comment-86 Rahul Wed, 26 Nov 2008 15:19:56 +0000 http://mcardlesdisease.org/?page_id=2#comment-86 I also believe I am suffering from some muscular disease, but not sure if it is McArdle although symptoms look almost same. I get tired comparatively early than my friends whenever we walk or play. After some exhaustion I notice dark brown urine. I also feel drain out daily when I have to sit in office for long time. I got myself examined many times but doctors think its just delusion of my mind. I happened to see this site, and sounds very helpful after reading people's experience as they match with mine. There are certain other problems I see, can you please help me if they are same with you or occur due to McArdle disease? 1. Improper body alignment, body tilt downwards, giving S curve shape to body.(Spongy body not muscular) 2. Is it only possible in women? I am 26 yrs old male feeling the same for a long time 3. Although exercise does not totally drain me out, but after exercising I feel stiffness in body. In case my symptoms lead to some other disease, you are aware of please help letting me know thanks. I also believe I am suffering from some muscular disease, but not sure if it is McArdle although symptoms look almost same. I get tired comparatively early than my friends whenever we walk or play. After some exhaustion I notice dark brown urine. I also feel drain out daily when I have to sit in office for long time. I got myself examined many times but doctors think its just delusion of my mind. I happened to see this site, and sounds very helpful after reading people’s experience as they match with mine. There are certain other problems I see, can you please help me if they are same with you or occur due to McArdle disease?

1. Improper body alignment, body tilt downwards, giving S curve shape to body.(Spongy body not muscular)
2. Is it only possible in women? I am 26 yrs old male feeling the same for a long time
3. Although exercise does not totally drain me out, but after exercising I feel stiffness in body.

In case my symptoms lead to some other disease, you are aware of please help letting me know thanks.

]]> By: Site Admin http://mcardlesdisease.org/about/comment-page-1/#comment-35 Site Admin Sun, 02 Nov 2008 17:01:51 +0000 http://mcardlesdisease.org/?page_id=2#comment-35 Hello Tammy - I'm glad you've been diagnosed (no more mystery) and have found the site. The more you know about McArdle's disease and the body, the better off you are. Nothing you find on this website, as the disclaimer indicates, can be construed as medical advice. Seek the guidance and consent of your physician before you make any significant changes to your diet and exercise habits. I can tell you that there is also a Facebook group for the disease, and you may also find more active discussions there. Otherwise, I can say that with few exceptions most people whom I encounter with the disease are better able to manage the symptoms with careful but diligent exercise and with a good diet. Exercises to improve strength and circulation may improve the way you feel, but it is up to your physician to determine what is practical and what is realistic for you, as all people are different. Read some of the articles on this website in the meanwhile, and ask questions here and on the Facebook McArdle's disease group. Welcome & good luck - Hello Tammy – I’m glad you’ve been diagnosed (no more mystery) and have found the site. The more you know about McArdle’s disease and the body, the better off you are. Nothing you find on this website, as the disclaimer indicates, can be construed as medical advice. Seek the guidance and consent of your physician before you make any significant changes to your diet and exercise habits.

I can tell you that there is also a Facebook group for the disease, and you may also find more active discussions there.

Otherwise, I can say that with few exceptions most people whom I encounter with the disease are better able to manage the symptoms with careful but diligent exercise and with a good diet. Exercises to improve strength and circulation may improve the way you feel, but it is up to your physician to determine what is practical and what is realistic for you, as all people are different.

Read some of the articles on this website in the meanwhile, and ask questions here and on the Facebook McArdle’s disease group. Welcome & good luck -

]]> By: Tammy http://mcardlesdisease.org/about/comment-page-1/#comment-34 Tammy Sun, 02 Nov 2008 16:51:58 +0000 http://mcardlesdisease.org/?page_id=2#comment-34 I am a 40-year-old mother of 2 and I would like to know what type of diet and exercise would be a healthy regiment for me to lose weight. You see before my diagnoses of McArdle's I was on 60mg of Prednisone a day for over a year and restricted from doing basically everything. In that years time I became extremely overweight (300lbs) and now I am having difficulty with my blood sugar levels. I have seen many dietitians and all are afraid to give me any suggestions because they are unfamiliar with this disease. Recently I had been to a Dr. who wants to put me on insulin and doesn’t realize that sometimes my sugar drops below 60 because of the McArdle’s. I have no idea how my body works so I am at a complete loss and I don’t want to injure myself. I just want to be able to live again. I have spoken with my Dr. and he suggested I try to speak with others diagnosed with McArdle's and maybe get and idea of what works for them, he says he can only tell me what they may feel or what to try but they "you" can actually tell me what you do and how you feel. My Dr. has helped me actually saved me because I had been through at least 9 different Dr.'s and countless procedures and tests. I was ready to give up until he said he wasn’t giving up and finally found what was wrong. I see him more than my primary care Dr. Any info you may have for my Dr. and I would be greatly appreciated. I am a 40-year-old mother of 2 and I would like to know what type of diet and exercise would be a healthy regiment for me to lose weight. You see before my diagnoses of McArdle’s I was on 60mg of Prednisone a day for over a year and restricted from doing basically everything. In that years time I became extremely overweight (300lbs) and now I am having difficulty with my blood sugar levels. I have seen many dietitians and all are afraid to give me any suggestions because they are unfamiliar with this disease. Recently I had been to a Dr. who wants to put me on insulin and doesn’t realize that sometimes my sugar drops below 60 because of the McArdle’s. I have no idea how my body works so I am at a complete loss and I don’t want to injure myself. I just want to be able to live again. I have spoken with my Dr. and he suggested I try to speak with others diagnosed with McArdle’s and maybe get and idea of what works for them, he says he can only tell me what they may feel or what to try but they “you” can actually tell me what you do and how you feel. My Dr. has helped me actually saved me because I had been through at least 9 different Dr.’s and countless procedures and tests. I was ready to give up until he said he wasn’t giving up and finally found what was wrong. I see him more than my primary care Dr. Any info you may have for my Dr. and I would be greatly appreciated.

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