Comments on: Diagnosis of McArdle’s Disease 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: Tina http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-1184 Tina Mon, 08 Feb 2010 15:31:10 +0000 http://mcardlesdisease.org/?page_id=33#comment-1184 I had that blood test and I am sorry but it was very painful for me. In fact it landed me in the emergency room! They treated me for a blood clot and the pain in my arm went away! I have been having troubles with my legs for 3 yrs now. I was over weight & was working on losing the weight. I worked upto jogging 3 miles a day. When one day I started getting these horrible leg cramps. I tried everything under the sun. 6 pairs of diff. shoes, more bananas, more strecthing. It has gotten worse for me. I have seen 2 family dr'S A Rheumatologist, 2 neurologists i have had 2 emg's which have test positive for myopathic potential. All my bld work is normal. Except the contraversy of if I have Mcardles. Ihave muscle twitches every where now. I actually count them lol at night. I can count up to 31 twiches in just my lower legs in 30 minutes. Walking up a flight of stairs leaves me winded and out of breath. I am not able to exercise at all anymore. I feel so weak and my muscles feel so tired all the time. They are now saying I might need a muscle biopsy & may need to see a 3rd neurologist. I just want an answer to what is happening to my body! I had that blood test and I am sorry but it was very painful for me. In fact it landed me in the emergency room! They treated me for a blood clot and the pain in my arm went away! I have been having troubles with my legs for 3 yrs now. I was over weight & was working on losing the weight. I worked upto jogging 3 miles a day. When one day I started getting these horrible leg cramps. I tried everything under the sun. 6 pairs of diff. shoes, more bananas, more strecthing. It has gotten worse for me. I have seen 2 family dr’S A Rheumatologist, 2 neurologists i have had 2 emg’s which have test positive for myopathic potential. All my bld work is normal. Except the contraversy of if I have Mcardles. Ihave muscle twitches every where now. I actually count them lol at night. I can count up to 31 twiches in just my lower legs in 30 minutes. Walking up a flight of stairs leaves me winded and out of breath. I am not able to exercise at all anymore. I feel so weak and my muscles feel so tired all the time. They are now saying I might need a muscle biopsy & may need to see a 3rd neurologist. I just want an answer to what is happening to my body!

]]> By: Diane http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-1092 Diane Mon, 11 Jan 2010 22:06:49 +0000 http://mcardlesdisease.org/?page_id=33#comment-1092 I posted a question under "The only realistic treatment for McArdle's" earlier and then I'm finding all of these other areas people chatting and questioning. I was asking if anyone knew a McArdle's patient who has had knee replacement? It is posted under "Diane". Also, wanted to add...I was diagnosed through an ischemic forearm test many years ago, and it was very debilitating. My Doctor had no idea how much pain I would under go, and he cried with me. Hopefully, it is not as painful now, and the blood test for the enzyme sounds great! Thanks...Diane I posted a question under “The only realistic treatment for McArdle’s” earlier and then I’m finding all of these other areas people chatting and questioning. I was asking if anyone knew a McArdle’s patient who has had knee replacement? It is posted under “Diane”.

Also, wanted to add…I was diagnosed through an ischemic forearm test many years ago, and it was very debilitating. My Doctor had no idea how much pain I would under go, and he cried with me. Hopefully, it is not as painful now, and the blood test for the enzyme sounds great!

Thanks…Diane

]]> By: Shanan Macpherson http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-912 Shanan Macpherson Sat, 14 Nov 2009 23:24:26 +0000 http://mcardlesdisease.org/?page_id=33#comment-912 I am so glad I found this website. I have recently been diagnosed with McArdle's. I have to say that like many of you I am relieved to find out what has been wrong with me my whole life. I have been embarrassed about something I have had no control over. I too would love to slap my PE teachers and say "SEE" !!! I wasn't being lazy !! My diagnosis started with a swollen lymph gland and some blood work. The results of the blood work was a CK level at 9,870 and no reason for it to be that high. (the lymph gland had nothing to do with anything)So, I will continue to avoid hilly walks, jogging, and be cautious of my limitations. I am so glad I found this website. I have recently been diagnosed with McArdle’s. I have to say that like many of you I am relieved to find out what has been wrong with me my whole life. I have been embarrassed about something I have had no control over. I too would love to slap my PE teachers and say “SEE” !!! I wasn’t being lazy !! My diagnosis started with a swollen lymph gland and some blood work. The results of the blood work was a CK level at 9,870 and no reason for it to be that high. (the lymph gland had nothing to do with anything)So, I will continue to avoid hilly walks, jogging, and be cautious of my limitations.

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-850 Jim Ottesen Tue, 20 Oct 2009 22:47:13 +0000 http://mcardlesdisease.org/?page_id=33#comment-850 Site Admin, Thanks for your comments. What you've posted makes enormous scientific sense. In fact, I am going to look at creatine as my energy could use all the help it can get. Often, I feel wasted without doing what one might consider exhausting. Of course we are all different, but I'm going to give creatine an experimental effort. I'll report back with my results. Jim Ottesen Site Admin,

Thanks for your comments. What you’ve posted makes enormous scientific
sense. In fact, I am going to look at creatine as my energy could
use all the help it can get. Often, I feel wasted without doing what
one might consider exhausting. Of course we are all different, but
I’m going to give creatine an experimental effort. I’ll report back
with my results. Jim Ottesen

]]> By: Site Admin http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-849 Site Admin Tue, 20 Oct 2009 18:03:11 +0000 http://mcardlesdisease.org/?page_id=33#comment-849 The fundamental problem with any oral supplements is once they're in your stomach, your body does with them as it pleases. Just because one ingests something doesn't mean that the body will transport it to the right location for ready access at the right time. A big dose of sugar may temporarily spike the concentration of glucose within the cell but only temporarily, because the body works just as quickly to store as fat what it thinks is extra energy. There are other hormonal reactions to a big dose of sugar which also contribute to feeling miserable. Creatine has promise for people with McArdle's disease. Theoretically, extending the window of energy you have from a resting state and allowing you to replenish that ATP quicker should offer relief to someone with a carbohydrate metabolism bottleneck like McArdle's disease. Up the cell's creatine phosphate concentrations and you might extend that energy window. The problem is that it's only a useful experiment when completely controlled. And again - since the body is a host of interdependent equilibrium reactions, upsetting any one concentration has implications elsewhere, some harmless and some not. The fundamental problem with any oral supplements is once they’re in your stomach, your body does with them as it pleases. Just because one ingests something doesn’t mean that the body will transport it to the right location for ready access at the right time. A big dose of sugar may temporarily spike the concentration of glucose within the cell but only temporarily, because the body works just as quickly to store as fat what it thinks is extra energy. There are other hormonal reactions to a big dose of sugar which also contribute to feeling miserable.

Creatine has promise for people with McArdle’s disease. Theoretically, extending the window of energy you have from a resting state and allowing you to replenish that ATP quicker should offer relief to someone with a carbohydrate metabolism bottleneck like McArdle’s disease. Up the cell’s creatine phosphate concentrations and you might extend that energy window. The problem is that it’s only a useful experiment when completely controlled.

And again – since the body is a host of interdependent equilibrium reactions, upsetting any one concentration has implications elsewhere, some harmless and some not.

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-846 Jim Ottesen Tue, 20 Oct 2009 01:02:25 +0000 http://mcardlesdisease.org/?page_id=33#comment-846 Hi Folks, Over a period of years, some have mentioned the value of ATP, amino acids,L-Carnitine, ribose, etc. As an "M" patient, I am curious to know from some of you as to whether any of you have received advice from a neurologist as to the value of any of the aforementioned. If there is a diet, vitamin, mineral, supplement or whatever, perhaps more could benefit. I have been told and read that B-6 is essential so I take 100 mg every day. Too often, we take "stuff" that others say is that "one thing." In reality, we need those in neuromuscular research to suggest those "things" that have the most value for our "M" bodies. Any thoughts on these ideas? Most neurologists could give us a "suggested diet or possible supplements and things", but I don't have one - do you? Jim Ottesen Hi Folks,

Over a period of years, some have mentioned the value of ATP, amino acids,L-Carnitine, ribose, etc. As an “M” patient, I am curious to
know from some of you as to whether any of you have received advice
from a neurologist as to the value of any of the aforementioned. If
there is a diet, vitamin, mineral, supplement or whatever, perhaps more
could benefit. I have been told and read that B-6 is essential so I take 100 mg every day. Too often, we take “stuff” that others
say is that “one thing.” In reality, we need those in neuromuscular
research to suggest those “things” that have the most value
for our “M” bodies. Any thoughts on these ideas? Most neurologists
could give us a “suggested diet or possible supplements and things”,
but I don’t have one – do you? Jim Ottesen

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-828 Jim Ottesen Sat, 17 Oct 2009 21:22:41 +0000 http://mcardlesdisease.org/?page_id=33#comment-828 <a href="#comment-224" rel="nofollow">@Sally B </a> Sally, Did you ever get an answer as to the name of the blood test that can clearly identify the bad "M?" I have heard of such a test, but I've not heard of any experts using it as THE TEST for "M." Matt Field, you started this, please help us to help others. I would appreciate any verified info on this. Help! Jim Ottesen @Sally B
Sally, Did you ever get an answer as to the name of the blood test
that can clearly identify the bad “M?” I have heard of such a test,
but I’ve not heard of any experts using it as THE TEST for “M.” Matt
Field, you started this, please help us to help others. I would appreciate any verified info on this. Help! Jim Ottesen

]]> By: Site Admin http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-652 Site Admin Wed, 26 Aug 2009 21:39:59 +0000 http://mcardlesdisease.org/?page_id=33#comment-652 The ischemic forearm test measures blood lactates before, after and during muscular contractions intense enough to produce fatigue symptoms (but hopefully not cramping.) Zero lactic acid production means there's a glucose bottleneck, which if other symptoms are present (chronic episodes of exercise-induced failure and cramping, dark urine, etc.) indicates that glycogen is not being metabolized into glucose. This test is probably no worse than other standard blood labs, as far as the discomfort it imposes. Memorize these words: <a href="http://www.med.ufl.edu/rheum/rheumTests.htm#ischemic" target="blank" title="test for Mcardle's disease" rel="nofollow">ischemic forearm test</a>. The ischemic forearm test measures blood lactates before, after and during muscular contractions intense enough to produce fatigue symptoms (but hopefully not cramping.) Zero lactic acid production means there’s a glucose bottleneck, which if other symptoms are present (chronic episodes of exercise-induced failure and cramping, dark urine, etc.) indicates that glycogen is not being metabolized into glucose.

This test is probably no worse than other standard blood labs, as far as the discomfort it imposes. Memorize these words: ischemic forearm test.

]]> By: Gail Williams http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-590 Gail Williams Sun, 19 Jul 2009 13:23:20 +0000 http://mcardlesdisease.org/?page_id=33#comment-590 I am a 63 yr. old woman that has just stumbled onto this information abot McArdle disease. Wow, the symptoms I've been reading are what I have had as far back as I can remember. It started before I could walk--when I started to walk I dragged my left leg. The doctors said it was a habit that I would out grow. So many of the things I'm reading on this web site such as back pain,cramps in the legs and feet,what I refer to as "running out of gas"and very little endurance and also the spots and crazy eye symptoms, are quite enlightening. What kind of a doctor should I contact to see if this what I have? Thanks to whoever lets me know. I am a 63 yr. old woman that has just stumbled onto this information abot McArdle disease. Wow, the symptoms I’ve been reading are what I have had as far back as I can remember. It started before I could walk–when I started to walk I dragged my left leg. The doctors said it was a habit that I would out grow. So many of the things I’m reading on this web site such as back pain,cramps in the legs and feet,what I refer to as “running out of gas”and very little endurance and also the spots and crazy eye symptoms, are quite enlightening. What kind of a doctor should I contact to see if this what I have? Thanks to whoever lets me know.

]]> By: Sally B http://mcardlesdisease.org/living-with-mcardles-disease/do-i-have-mcardles-disease/diagnosis-of-mcardles-disease/comment-page-1/#comment-224 Sally B Thu, 12 Mar 2009 21:57:33 +0000 http://mcardlesdisease.org/?page_id=33#comment-224 Hi, I too would like more info on the blood test mentioned. Can you send it to me??? Thanks Sally Hi, I too would like more info on the blood test mentioned.
Can you send it to me???

Thanks
Sally

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