Comments on: Do I Have It? 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: mike stanley http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-1053 mike stanley Mon, 04 Jan 2010 01:17:46 +0000 http://mcardlesdisease.org/?page_id=9#comment-1053 Hi my symptoms are severe muscle cramps all over if work for more than 8 hrs a day or exercise moderately. Ive been to the doctors and my ck levels were high! My symptoms all fit except for dark urine.I do suffer from frequent urination and have found on days of real frequent urination i get severe cramps .I seem to also cramp really bad right after lunch and supper .Went for a muscle test where they listened to my muscles and said that was normal although i was cramping during the test. They suggested a mucle biopsy but i didnt go just try to deal best i could.What test best shows Mcardles disease Hi my symptoms are severe muscle cramps all over if work for more than 8 hrs a day or exercise moderately. Ive been to the doctors and my ck levels were high! My symptoms all fit except for dark urine.I do suffer from frequent urination and have found on days of real frequent urination i get severe cramps .I seem to also cramp really bad right after lunch and supper .Went for a muscle test where they listened to my muscles and said that was normal although i was cramping during the test. They suggested a mucle biopsy but i didnt go just try to deal best i could.What test best shows Mcardles disease

]]> By: Shanan Macpherson http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-914 Shanan Macpherson Sat, 14 Nov 2009 23:47:05 +0000 http://mcardlesdisease.org/?page_id=9#comment-914 This message is for Kim. I totally get the beer thing !!! I too find all my symptoms seem to vanish after a couple of beers. My doctor said I shouldnt drink as it could make things worse, but I don't understand ?? It makes me feel better . How can that be bad ? This message is for Kim. I totally get the beer thing !!! I too find all my symptoms seem to vanish after a couple of beers. My doctor said I shouldnt drink as it could make things worse, but I don’t understand ?? It makes me feel better . How can that be bad ?

]]> By: Raymon http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-909 Raymon Fri, 13 Nov 2009 21:11:47 +0000 http://mcardlesdisease.org/?page_id=9#comment-909 I come from Norway so sorry for my bad english. I have symptoms similar to McArdle's Disease and I have been tested for metabolic myopathy and a variety of other muscle diseases. But the neurologist can not find anything with me. Would neurologist seen if I had McArdle's Disease from the tests he has done in relation to metabolic myopathy? I do not know if he has taken a CPK test, but will he be able to see 100% sure if I can have McArdle's from this test? I get a printout of my test results on Tuesday, so I'll see if they have taken a CPK test and what the value was. Hope you understand my english Thank you in advance I come from Norway so sorry for my bad english.

I have symptoms similar to McArdle’s Disease and I have been tested for metabolic myopathy and a variety of other muscle diseases. But the neurologist can not find anything with me. Would neurologist seen if I had McArdle’s Disease from the tests he has done in relation to metabolic myopathy? I do not know if he has taken a CPK test, but will he be able to see 100% sure if I can have McArdle’s from this test? I get a printout of my test results on Tuesday, so I’ll see if they have taken a CPK test and what the value was.

Hope you understand my english
Thank you in advance

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-901 Jim Ottesen Tue, 10 Nov 2009 01:27:26 +0000 http://mcardlesdisease.org/?page_id=9#comment-901 Kim, I'm very happy to hear of your low CPK, but I would still keep an eye on it whenever a routine blood draw is ordered or you experience bad pain for no apparent reason. While you may not have McArdle's, remember there are other neurological deseases that may cause some of your symptoms so if things become more difficult for you, consider having your doctor do a neurological consult. My very best wishes to you. I wish you good health and much happiness! Jim Kim,

I’m very happy to hear of your low CPK, but I would still keep an eye on it whenever a routine blood draw is ordered or you experience bad
pain for no apparent reason. While you may not have McArdle’s, remember
there are other neurological deseases that may cause some of your symptoms so if things become more difficult for you, consider having
your doctor do a neurological consult. My very best wishes to you. I
wish you good health and much happiness!

Jim

]]> By: Kim http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-900 Kim Mon, 09 Nov 2009 22:43:52 +0000 http://mcardlesdisease.org/?page_id=9#comment-900 <a href="#comment-891" rel="nofollow">@Jim Ottesen </a> Hi Jim, I just saw this post from you... For whatever reason, the CPK was not drawn that day. I had to go back last week to be drawn again and the doc's office just called me today with the results. I think I'm going to try the B-12 sublinguels again... Kim @Jim Ottesen
Hi Jim,

I just saw this post from you…
For whatever reason, the CPK was not drawn that day. I had to go back last week to be drawn again and the doc’s office just called me today with the results. I think I’m going to try the B-12 sublinguels again…

Kim

]]> By: Kim http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-899 Kim Mon, 09 Nov 2009 22:41:44 +0000 http://mcardlesdisease.org/?page_id=9#comment-899 Hi Jim... Doctor called today. My CPK is 44, so no McArdle's! Back to square one I guess. Very frustrating... Thank you for your help, I hope you're feeling well!!! Kim Hi Jim…
Doctor called today. My CPK is 44, so no McArdle’s! Back to square one I guess. Very frustrating…

Thank you for your help, I hope you’re feeling well!!!
Kim

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-891 Jim Ottesen Mon, 02 Nov 2009 21:57:56 +0000 http://mcardlesdisease.org/?page_id=9#comment-891 Kim, I hope you got your results today and all went well, but I suspect that you have some issues to consider. Please keep us posted as I'm still concerned about your CPK and other kidney issues. Jim Ottesen Kim,

I hope you got your results today and all went well, but I suspect
that you have some issues to consider. Please keep us posted as
I’m still concerned about your CPK and other kidney issues.

Jim Ottesen

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-882 Jim Ottesen Sat, 31 Oct 2009 02:19:35 +0000 http://mcardlesdisease.org/?page_id=9#comment-882 Kim, Frankly, I'm not as worried about the BP as I am about the other results which, depending on the levels, are worrisome. I am a little upset that your CPK level was not shown - I assume from that fact your doctor did not request that test. He should do so as soon as possible! That could give us a solid clue to McArdle's Disease. The other levels could suggest lots of other things, and that's fine, but you need the CPK level NOW! I suggest you take your blood pressure twice a day - once in the morning and once in the afternoon/early evening when things are normal, maintain a log, note any special stress items or meds and at the end of the week let the doctor have a copy and let us know the high, the low and the average. Be sure you take the BP the same way each time, have your arm at heart level and make sure you are not interrupted and you are at peace each time. When was your BP last at 90/60? Any heart, stress or other factors that might have caused the increase? Do you have sleep apnea, gout, rapid heart, weight or other issues? I'm anxious to see what your doctor suggests next. I know some neurologists can be difficult (like the one who told me to go on a sarfari), but if your doctor doesn't soon identify your problem, more serious consequences could be down the road. Let us know the outcome. Jim Ottesen Kim,

Frankly, I’m not as worried about the BP as I am about the other results
which, depending on the levels, are worrisome. I am a little upset that
your CPK level was not shown – I assume from that fact your doctor did
not request that test. He should do so as soon as possible! That
could give us a solid clue to McArdle’s Disease. The other levels could
suggest lots of other things, and that’s fine, but you need the CPK
level NOW! I suggest you take your blood pressure twice a day – once
in the morning and once in the afternoon/early evening when things are
normal, maintain a log, note any special stress items or meds and
at the end of the week let the doctor have a copy and let us know the
high, the low and the average. Be sure you take the BP the same way
each time, have your arm at heart level and make sure you are not interrupted and you are at peace each time. When was your BP last
at 90/60? Any heart, stress or other factors that might have caused the
increase? Do you have sleep apnea, gout, rapid heart, weight or other
issues? I’m anxious to see what your doctor suggests next. I know
some neurologists can be difficult (like the one who told me to go
on a sarfari), but if your doctor doesn’t soon identify your problem, more serious consequences could be down the road. Let us know
the outcome. Jim Ottesen

]]> By: Kim http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-881 Kim Fri, 30 Oct 2009 15:23:56 +0000 http://mcardlesdisease.org/?page_id=9#comment-881 PS. I called the office and spoke with the nurse. She said my total protein, albumin, hematicrit, hemoglobin and myoglobin are high but the doc hasn't seen the results yet. He'll call me Monday. Incidentally...my BP has always been 90/60 but the last few months it's been 135/80... I have to wait until Monday for the doctor to interpret the results. Kim PS. I called the office and spoke with the nurse. She said my total protein, albumin, hematicrit, hemoglobin and myoglobin are high but the doc hasn’t seen the results yet. He’ll call me Monday. Incidentally…my BP has always been 90/60 but the last few months it’s been 135/80…

I have to wait until Monday for the doctor to interpret the results.

Kim

]]> By: Kim http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/comment-page-1/#comment-880 Kim Fri, 30 Oct 2009 14:34:48 +0000 http://mcardlesdisease.org/?page_id=9#comment-880 Thank you Jim, My doc sent me to a neuro but he was not for me, looking for a new one. I have partial complex seizures also. My running distance has pretty much ended at 4.5 miles anyway. My dream of running the Boston marathon has been shelved (FOR NOW!) Having never been active before I started running, then loving to run, it has opened my eyes to the reasons I was never active before. About 4 years ago we took the kids to Disney and by the end of the first day I literally could not walk. I sat for about an hour thinking I just needed a rest...this and a few other experiences have been coming to mind. I learned to ignore pain/tiredness, which came in handy for marathon training. You have to learn to push through pain/fatigue to run 26 miles. Unfortunately it also got me a few injuries. I don't ignore it anymore. I stop when I get the signals now. After that marathon I didn't walk for 3 days and it took 3 months to walk w/o a limp. Talk about ignoring!!! Hopefully the doctor calls today. Thank you for replying! Best wishes to you also. You seem to really have a handle on this disease and IF I do have this, I will be asking you some questions!!!!! Kim Thank you Jim,

My doc sent me to a neuro but he was not for me, looking for a new one. I have partial complex seizures also. My running distance has pretty much ended at 4.5 miles anyway. My dream of running the Boston marathon has been shelved (FOR NOW!) Having never been active before I started running, then loving to run, it has opened my eyes to the reasons I was never active before.

About 4 years ago we took the kids to Disney and by the end of the first day I literally could not walk. I sat for about an hour thinking I just needed a rest…this and a few other experiences have been coming to mind. I learned to ignore pain/tiredness, which came in handy for marathon training. You have to learn to push through pain/fatigue to run 26 miles. Unfortunately it also got me a few injuries. I don’t ignore it anymore. I stop when I get the signals now. After that marathon I didn’t walk for 3 days and it took 3 months to walk w/o a limp. Talk about ignoring!!!

Hopefully the doctor calls today.
Thank you for replying! Best wishes to you also. You seem to really have a handle on this disease and IF I do have this, I will be asking you some questions!!!!!

Kim

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