Comments on: Living with 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: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/comment-page-1/#comment-1036 Jim Ottesen Tue, 29 Dec 2009 21:33:11 +0000 http://mcardlesdisease.org/?page_id=35#comment-1036 <a href="#comment-1034" rel="nofollow">@Site Admin </a> Terri, Not too much has changed. I was just diagnosed two years ago and experience the same problems you mentioned with the exception of hospitalization. I try to keep muscle strain to a minimum, use hemasticks if concerned, drink lots of water, take 100mg of B-6 and a good multiple vitamin on a daily basis. In addition, I find that a modest exercise program (no weights), whey protein, L-Carnitine (500 mg) before exercise and a good diet rich in vegetables, fish and fruits keeps my complaints to a minimum. I can't seem to beat the fatigue symptom, but, if necessary, I'll take an hour nap and seem to snap back to stay on top of things. Perhaps some of these ideas will be of help to you. Let me know if you have any questions. Best wishes, Jim Ottesen @Site Admin
Terri,
Not too much has changed. I was just diagnosed two years ago and
experience the same problems you mentioned with the exception of hospitalization. I try to keep muscle strain to a minimum, use
hemasticks if concerned, drink lots of water, take 100mg of B-6 and
a good multiple vitamin on a daily basis. In addition, I find that
a modest exercise program (no weights), whey protein, L-Carnitine (500
mg) before exercise and a good diet rich in vegetables, fish and
fruits keeps my complaints to a minimum. I can’t seem to beat the fatigue symptom, but, if necessary, I’ll take an hour nap and seem to
snap back to stay on top of things. Perhaps some of these ideas will
be of help to you. Let me know if you have any questions. Best wishes,
Jim Ottesen

]]> By: Site Admin http://mcardlesdisease.org/living-with-mcardles-disease/comment-page-1/#comment-1034 Site Admin Tue, 29 Dec 2009 03:23:13 +0000 http://mcardlesdisease.org/?page_id=35#comment-1034 <blockquote cite="#commentbody-756" class="regularquote"> <strong><a href="#comment-756" rel="nofollow">Joaquin Obregón</a> :</strong> <p>Nice update.</p> <p>¿All kind of physical activities?</p> <p>Last paragraph is too optimistic but I am sure that all of us (Mc Ardle’s affected) will strive to make it real.</p> <p>Regards</p> </blockquote> Perhaps lost in the translation, "all" meaning "many." There is no such thing as too optimistic.

Joaquin Obregón :

Nice update.

¿All kind of physical activities?

Last paragraph is too optimistic but I am sure that all of us (Mc Ardle’s affected) will strive to make it real.

Regards

Perhaps lost in the translation, “all” meaning “many.” There is no such thing as too optimistic.

]]> By: Teri Gilmore http://mcardlesdisease.org/living-with-mcardles-disease/comment-page-1/#comment-1033 Teri Gilmore Tue, 29 Dec 2009 01:48:38 +0000 http://mcardlesdisease.org/?page_id=35#comment-1033 I was diagnosed with McArdles 10 years ago. I am now 49. Everything makes so much sense now re: childhood muscle pain,poor stamina,etc. Mine was discovered when I was having a lot of muscle pain,and had a ck level of 20,081. I have been in the hospital several times rhabdmylodosis,muscle pain, and fatigue, Standard treatment was I.V.'s and pain meds.My ck levels very rarely go below 4,000. Any new info would be appreciated! Thank-you,Teri Gilmore I was diagnosed with McArdles 10 years ago. I am now 49. Everything makes so much sense now re: childhood muscle pain,poor stamina,etc. Mine was discovered when I was having a lot of muscle pain,and had a ck level of 20,081. I have been in the hospital several times rhabdmylodosis,muscle pain, and fatigue, Standard treatment was I.V.’s and pain meds.My ck levels very rarely go below 4,000. Any new info would be appreciated! Thank-you,Teri Gilmore

]]> By: Jim Ottesen http://mcardlesdisease.org/living-with-mcardles-disease/comment-page-1/#comment-817 Jim Ottesen Fri, 16 Oct 2009 19:46:15 +0000 http://mcardlesdisease.org/?page_id=35#comment-817 <a href="#comment-756" rel="nofollow">@Joaquin Obregón </a> Joaquin, As a 72 year old "M" individual, I can say "yes" to your question, within the limits of your disease. However, remember we all have different limits of capabilities and we must pace ourselves to our situation. And, always remember, there is that "second wind" experience many live with that suggests opportunity is what you make it. Strive on. Best wishes, Jim Ottesen @Joaquin Obregón
Joaquin,

As a 72 year old “M” individual, I can say “yes” to your question,
within the limits of your disease. However, remember we all have
different limits of capabilities and we must pace ourselves to our
situation. And, always remember, there is that “second wind”
experience many live with that suggests opportunity is what you make
it. Strive on. Best wishes, Jim Ottesen

]]> By: Joaquin Obregón http://mcardlesdisease.org/living-with-mcardles-disease/comment-page-1/#comment-756 Joaquin Obregón Sun, 27 Sep 2009 10:08:35 +0000 http://mcardlesdisease.org/?page_id=35#comment-756 Nice update. ¿All kind of physical activities? Last paragraph is too optimistic but I am sure that all of us (Mc Ardle's affected) will strive to make it real. Regards Nice update.

¿All kind of physical activities?

Last paragraph is too optimistic but I am sure that all of us (Mc Ardle’s affected) will strive to make it real.

Regards

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