Comments on: Health Care Resources 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: ron beall http://mcardlesdisease.org/mcardles-disease-health-care-resources/comment-page-1/#comment-1234 ron beall Thu, 18 Feb 2010 21:25:58 +0000 http://mcardlesdisease.org/?page_id=23#comment-1234 I have some questions on mcardle 5 I am suffering from this diease and not to seem to get any relief cause the doc I go to is not updated with this diease. what is the cpk levels about? also does it affect your upper gi and liver? I live in wisconsin and need to find a doctor here.Anything you have will be helpful. I have some questions on mcardle 5 I am suffering from this diease and not to seem to get any relief cause the doc I go to is not updated with this diease. what is the cpk levels about? also does it affect your upper gi and liver? I live in wisconsin and need to find a doctor here.Anything you have will be helpful.

]]> By: André http://mcardlesdisease.org/mcardles-disease-health-care-resources/comment-page-1/#comment-929 André Sat, 21 Nov 2009 23:26:16 +0000 http://mcardlesdisease.org/?page_id=23#comment-929 i can even raise the weight lifted for big muscles a lot, not the same for small muscles, triceps get only a small improvement and biceps dont get noting whit heavy weight. But whit low weight i can get some bicep improvement started whit 1,5Kg and only could do about 40, but in 1 weak, i can do that infinitely, get over than 500 and give up cause i was bored :D, i tink that i could resist the low energie phase and got to the 2º wing phase :D i can even raise the weight lifted for big muscles a lot, not the same for small muscles, triceps get only a small improvement and biceps dont get noting whit heavy weight.

But whit low weight i can get some bicep improvement started whit 1,5Kg and only could do about 40, but in 1 weak, i can do that infinitely, get over than 500 and give up cause i was bored :D , i tink that i could resist the low energie phase and got to the 2º wing phase :D

]]> By: André http://mcardlesdisease.org/mcardles-disease-health-care-resources/comment-page-1/#comment-928 André Sat, 21 Nov 2009 23:19:06 +0000 http://mcardlesdisease.org/?page_id=23#comment-928 I get my diagnose in September im 22 years old, wen younger i only get exhausted to fast and get the "hit the wall" simptom, muscle cramples i only get it wen i start become older (10 years +). But i have discovered something interesting even before my diagnose. Musculation whit heavy weight help reduce my cramples a lot. wen i get a muscle crample that muscle just become stronger and trained and dont get the same intensitie of pain after a exercise even exercices whit max weight and short repetitions, i get the mitigation but not the cramples, so, wen i was doing gyms after first sessions my cramples was rare, and wen i got one, i just discover that muscle and invent a exercise for him. But now doctor say that musculation is poison to me and i left gyms, hopeful if i do my normal life i am ok, i only have crample whit heavy weights, but now i cant do sports. My question is should i do musculation that make me feel better? that will compromises my future? or should i leave is even knowing that i fell worst whitout musculation? I get my diagnose in September im 22 years old, wen younger i only get exhausted to fast and get the “hit the wall” simptom, muscle cramples i only get it wen i start become older (10 years +). But i have discovered something interesting even before my diagnose. Musculation whit heavy weight help reduce my cramples a lot. wen i get a muscle crample that muscle just become stronger and trained and dont get the same intensitie of pain after a exercise even exercices whit max weight and short repetitions, i get the mitigation but not the cramples, so, wen i was doing gyms after first sessions my cramples was rare, and wen i got one, i just discover that muscle and invent a exercise for him. But now doctor say that musculation is poison to me and i left gyms, hopeful if i do my normal life i am ok, i only have crample whit heavy weights, but now i cant do sports.

My question is should i do musculation that make me feel better? that will compromises my future? or should i leave is even knowing that i fell worst whitout musculation?

]]> By: Jim Ottesen http://mcardlesdisease.org/mcardles-disease-health-care-resources/comment-page-1/#comment-833 Jim Ottesen Sun, 18 Oct 2009 16:25:26 +0000 http://mcardlesdisease.org/?page_id=23#comment-833 <a href="#comment-780" rel="nofollow">@rebecca Roark </a> Rebecca, I am sorry that your doctor hasn't done more for you. First there is a relatively new medication that helps with the energy issue - your neurologist must have the name - consider it. Oxycodone is great for pain, but has a tendancy to be addictive so only take what you have to have. You must stay on the B-6 and coQ10! They are not just for energy - they protect you in too many ways to list on this posting. What test was used to diagnosis your condidion? If "M" is your main issue, there might be a secondary factor involved like arthritis or fibromyalgia. Is your weight stable? What do you do daily that might be stressing your muscles? Do you exercise? How? In your case, you need to do the following: See a neurologist experienced in McArdles Disease and he should confirm "M" and seek a related problem. You mentioned your rheumatologist suggested your kidneys might "shut down" - what did he suggest you might have? More important, what did he suggest you should do to protect your kidneys? Right now, you need to increase your water to at least 8 glasses a day, including other liquids, or you do run the risk of a serious kidney issue. I suggest you get an appointment with a good kidney doctor to test your kidneys for any problems like "rhab." You should: not smoke, reduce your sugar, lower your salt, stop any alcohol, reduce mental and physical stress and know that you have a wonderful life to live. You just need to find a doctor who can give you better answers, Then you can take control of your condition. Some folks feel an amino acid complex is of value - find out from your new doctor. A good multi-vitamin helps, try one of the nutritious greens formulas and eat healthy meals. We want to see you improve, you can improve, so please let know how things progress. We are not doctors, but we do have "M" and we try to help. Ask your doctor if you can try some of these suggestions. Then, ask him for his suggestions. We hope to hear some good news from you soon. Good luck! Jim Ottesen @rebecca Roark
Rebecca, I am sorry that your doctor hasn’t done more for you. First
there is a relatively new medication that helps with the energy issue -
your neurologist must have the name – consider it. Oxycodone is great
for pain, but has a tendancy to be addictive so only take what you have to have. You must stay on the B-6 and coQ10! They are not just for energy – they protect you in too many ways to list on this posting.
What test was used to diagnosis your condidion? If “M” is your main issue, there might be a secondary factor involved like arthritis
or fibromyalgia. Is your weight stable? What do you do daily that
might be stressing your muscles? Do you exercise? How? In your case,
you need to do the following: See a neurologist experienced in McArdles
Disease and he should confirm “M” and seek a related problem. You mentioned your
rheumatologist suggested your kidneys might “shut down” – what did
he suggest you might have? More important, what did he suggest you should do to protect your kidneys? Right now, you need to increase
your water to at least 8 glasses a day, including other liquids, or
you do run the risk of a serious kidney issue. I suggest you get an
appointment with a good kidney doctor to test your kidneys for any
problems like “rhab.” You should: not smoke, reduce your sugar, lower
your salt, stop any alcohol, reduce mental and physical stress and
know that you have a wonderful life to live. You just need to find
a doctor who can give you better answers, Then you can take control of your
condition. Some folks feel an amino acid complex is of value – find
out from your new doctor. A good multi-vitamin helps, try one of the
nutritious greens formulas and eat healthy meals. We want to see you improve, you can improve, so please let know how things progress.
We are not doctors, but we do have “M” and we try to help. Ask your
doctor if you can try some of these suggestions. Then, ask him for
his suggestions. We hope to hear some good news from you soon. Good
luck! Jim Ottesen

]]> By: rebecca Roark http://mcardlesdisease.org/mcardles-disease-health-care-resources/comment-page-1/#comment-780 rebecca Roark Sat, 03 Oct 2009 16:58:48 +0000 http://mcardlesdisease.org/?page_id=23#comment-780 I am 21 years old i was diagnosed with McArdles last year. I have chronic pain fatigue and overall weekness. My cpk level never comes dowm in the past year the loweset it's been is 1800 up to 80,000. I currently take oxycodone for the pain it helps some. But i wanted to know if their is anything my doctor can give me to help more with the pain and is thier anything he can give me to give me some energy i have two small kids and most days i have to fight my body to get out of bed because of pain and fatigue. I also have a lot of episodes where my muscle just stop like my upper legs and hands and fingers and feet will get so stiff i just can't move and excruciating pain this usaally lasts 4 to 9 hours. I've also noticed that every time my cpk levels get really high i get really depressed. Is their any meds or anything else i can do to improve my quality of life. I've tried special diet, b6, c0q10, physical therapy and it doesn't help. I would just like to have enough energy to be a good mom and i believe that if my pain wasn't so bad i good have a better life. One more question my Rumatologists told me that because my cpk wouldn't go down my kidney's are going to shut down is that true? I just don't understand because all the research i've seen has said that people with McArdele's can lead pretty normal lives so why can't i? A lot of people think i'm just putting on but blood work doesn't lie and when the pain so bad i can't move that should show them it's not fake what do i say to them? I am 21 years old i was diagnosed with McArdles last year. I have chronic pain fatigue and overall weekness. My cpk level never comes dowm in the past year the loweset it’s been is 1800 up to 80,000. I currently take oxycodone for the pain it helps some. But i wanted to know if their is anything my doctor can give me to help more with the pain and is thier anything he can give me to give me some energy i have two small kids and most days i have to fight my body to get out of bed because of pain and fatigue. I also have a lot of episodes where my muscle just stop like my upper legs and hands and fingers and feet will get so stiff i just can’t move and excruciating pain this usaally lasts 4 to 9 hours. I’ve also noticed that every time my cpk levels get really high i get really depressed. Is their any meds or anything else i can do to improve my quality of life. I’ve tried special diet, b6, c0q10, physical therapy and it doesn’t help. I would just like to have enough energy to be a good mom and i believe that if my pain wasn’t so bad i good have a better life. One more question my Rumatologists told me that because my cpk wouldn’t go down my kidney’s are going to shut down is that true? I just don’t understand because all the research i’ve seen has said that people with McArdele’s can lead pretty normal lives so why can’t i? A lot of people think i’m just putting on but blood work doesn’t lie and when the pain so bad i can’t move that should show them it’s not fake what do i say to them?

]]> By: Rita Wagoner http://mcardlesdisease.org/mcardles-disease-health-care-resources/comment-page-1/#comment-768 Rita Wagoner Mon, 28 Sep 2009 23:11:48 +0000 http://mcardlesdisease.org/?page_id=23#comment-768 I was diagnosed in my .Iam now 57. I have seen Dr. Sloniam and learn lots from him. My neurologist just knows about it but does not really seem interested. I am experiencing pain on a daily bases and it is like a knife is stabbing me in my legs. I stay fatigued most of the time and I had tripple by-pass surgery last year. The frightening thing about that is that I cann't take statins because they damage my muscles. After a few dosages my CPK levels go off the scale. I am also diabetic and that is the most confusing of all. How does diabetes and McArdles work? I am a nurse and I just kept insisting that there was someting wrong with me and I finally got a physician to do a muscle biopsy on me. I was diagnosed in my .Iam now 57. I have seen Dr. Sloniam and learn lots from him. My neurologist just knows about it but does not really seem interested. I am experiencing pain on a daily bases and it is like a knife is stabbing me in my legs. I stay fatigued most of the time and I had tripple by-pass surgery last year. The frightening thing about that is that I cann’t take statins because they damage my muscles. After a few dosages my CPK levels go off the scale. I am also diabetic and that is the most confusing of all. How does diabetes and McArdles work? I am a nurse and I just kept insisting that there was someting wrong with me and I finally got a physician to do a muscle biopsy on me.

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