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Non-Inflammatory Myopathy???
chucklobert posted:
My doctor is sending me for a muscle biopsy to look for a non inflammatory muscle breakdown disorder. When I asked what that would include he said that if I googled it I could see a list of the possibilites. I googled it and looked around and have been unable to find much of anything on non inflammatory myopathies. Do you know what disorders/diseases this would encompass? I have proximal muscle weakness in my arms and legs on both sides. I also get tingling/numbness in my legs, again on both sides. I have had a brain MRI that was normal, a cervical spine MRI that didn't show anything that would cause these symptoms (according to my neurologist). I have also had an upper body EMG that was normal, and lots of blood work that was all normal.
4 Replies |Watch This Discussion | Report This| Share this:Non-Inflammatory Myopathy???My doctor is sending me for a muscle biopsy to look for a non inflammatory muscle breakdown disorder. When I asked what that would include he said that if I googled it I could see a list of the possibilites. I googled it and looked around and have been unable to find much of anything on non inflammatory myopathies. Do you know what disorders/diseases this would encompass? I have proximal muscle weakness in my arms and legs on both sides. I also get tingling/numbness in my legs, again on both sides. I have had a brain MRI that was normal, a cervical spine MRI that didn't show anything that would cause these symptoms (according to my neurologist). I have also had an upper body EMG that was normal, and lots of blood work that was all normal.
susiemargaret responded:
hello, chuck --
it absolutely infuriates me when drs ignore their responsibility to inform their patients by saying, "go look it up somewhere" {hidden text -- "so i don't have to spend my own time talking with you about it"}. because i think this is so irresponsible and callous, my first suggestion is that you find another dr and then, after you have been accepted as a patient by the other dr, to tell your first dr why you changed (see PS1).
i appreciate that you may not want to go thru the hassle of finding another dr right now, perhaps repeating tests, etc. i don't think your desire to avoid conflict with him means that you have to let this action on his part just fall by the wayside, tho. if it were me, at the end of my next visit, i would say something to the effect of, "i don't think it is reasonable for you to ask me to do my own research on what conditions i might have; that's why i came to a dr/specialist in the first place."
now, on to the substance of your post. broadly, myopathy means any disease of a muscle. in practice, however, it is usually taken to mean a degeneration of skeletal muscle that is not attributable to nerve dysfunction.
the symptoms of myopathy are muscle wasting, weakness, and anomalies in various muscle fibers and cells. diagnosis is made by muscle biopsy (the test you will be undergoing), blood tests measuring the level of certain enzymes that indicate the presence of antibodies, and electromyography, a test that measures electrical activity in the muscles. many of the noninflammatory myopathies have a genetic component even tho symptoms do not appear until early adulthood.
some of the various noninflammatory myopathies are --
-- mcCardle's disease, which i've also seen listed as mcArdle's disease, a disorder in which the body is unable to convert carbohydrates into the sugar necessary to provide immediate energy for the body;
-- myotonia congenita, a disorder evidenced by spasms and temporary rigidity of the muscles after they have been at rest or when an attempt to move them is made;
-- nemaline myopathy, a nonprogressive muscle weakness most obvious in the muscles that are closer to the middle of the body and characterized by the presence of a specific configuration of cells;
-- central core disease, which causes delayed motor development, esp in the legs; and
-- any of the disorders considered to be a form of muscular dystrophy, all of which are characterized by progressive deterioration of the muscles that control movement.
i am not a medical person (see PS2), but it looks to me as if all of these myopathies are essentially different ways of stating "muscle pain and weakness," tho with different causes and prognoses. the more important thing, it seems to me, is whether the cause for any of them can be determined and/or eliminated, and whether the muscle problems can be reduced/controlled.
do you take what are called "statins" for high cholesterol? the use of statins can cause myopathy and, eventually, a compromise of liver function; obviously, then, discontinuing the use of statins might eliminate the myopathy. myopathies of genetic origin can often be reduced/controlled by exercise, physical therapy, prescription meds, devices for improving mobility such as braces, walkers, and canes, and sometimes surgery.
i hope you can get enough useful info from your tests to be able to decide where to go from here. i am so sorry that your dr was so unresponsive to your concerns. please keep us posted.
-- susie margaret
PS1 -- i could not tell if the dr you are referring to is your neurologist or if these are separate people; i'm not sure whether or not this matters, except that finding a new neurologist might be harder than finding a new family dr.
PS2 -- correction/amendment/replacement of the info in this post encouraged, welcomed, and indeed begged for!
it absolutely infuriates me when drs ignore their responsibility to inform their patients by saying, "go look it up somewhere" {hidden text -- "so i don't have to spend my own time talking with you about it"}. because i think this is so irresponsible and callous, my first suggestion is that you find another dr and then, after you have been accepted as a patient by the other dr, to tell your first dr why you changed (see PS1).
i appreciate that you may not want to go thru the hassle of finding another dr right now, perhaps repeating tests, etc. i don't think your desire to avoid conflict with him means that you have to let this action on his part just fall by the wayside, tho. if it were me, at the end of my next visit, i would say something to the effect of, "i don't think it is reasonable for you to ask me to do my own research on what conditions i might have; that's why i came to a dr/specialist in the first place."
now, on to the substance of your post. broadly, myopathy means any disease of a muscle. in practice, however, it is usually taken to mean a degeneration of skeletal muscle that is not attributable to nerve dysfunction.
the symptoms of myopathy are muscle wasting, weakness, and anomalies in various muscle fibers and cells. diagnosis is made by muscle biopsy (the test you will be undergoing), blood tests measuring the level of certain enzymes that indicate the presence of antibodies, and electromyography, a test that measures electrical activity in the muscles. many of the noninflammatory myopathies have a genetic component even tho symptoms do not appear until early adulthood.
some of the various noninflammatory myopathies are --
-- mcCardle's disease, which i've also seen listed as mcArdle's disease, a disorder in which the body is unable to convert carbohydrates into the sugar necessary to provide immediate energy for the body;
-- myotonia congenita, a disorder evidenced by spasms and temporary rigidity of the muscles after they have been at rest or when an attempt to move them is made;
-- nemaline myopathy, a nonprogressive muscle weakness most obvious in the muscles that are closer to the middle of the body and characterized by the presence of a specific configuration of cells;
-- central core disease, which causes delayed motor development, esp in the legs; and
-- any of the disorders considered to be a form of muscular dystrophy, all of which are characterized by progressive deterioration of the muscles that control movement.
i am not a medical person (see PS2), but it looks to me as if all of these myopathies are essentially different ways of stating "muscle pain and weakness," tho with different causes and prognoses. the more important thing, it seems to me, is whether the cause for any of them can be determined and/or eliminated, and whether the muscle problems can be reduced/controlled.
do you take what are called "statins" for high cholesterol? the use of statins can cause myopathy and, eventually, a compromise of liver function; obviously, then, discontinuing the use of statins might eliminate the myopathy. myopathies of genetic origin can often be reduced/controlled by exercise, physical therapy, prescription meds, devices for improving mobility such as braces, walkers, and canes, and sometimes surgery.
i hope you can get enough useful info from your tests to be able to decide where to go from here. i am so sorry that your dr was so unresponsive to your concerns. please keep us posted.
-- susie margaret
PS1 -- i could not tell if the dr you are referring to is your neurologist or if these are separate people; i'm not sure whether or not this matters, except that finding a new neurologist might be harder than finding a new family dr.
PS2 -- correction/amendment/replacement of the info in this post encouraged, welcomed, and indeed begged for!
Report This| Share this:Non-Inflammatory Myopathy???hello, chuck --<br /> <br />it absolutely <b>infuriates</b> me when drs ignore their responsibility to inform their patients by saying, "go look it up somewhere" {<b><i>hidden text</i></b> -- "so i don't have to spend my own time talking with you about it"}. because i think this is so irresponsible and callous, my first suggestion is that you find another dr and then, <b>after</b> you have been accepted as a patient by the other dr, to tell your first dr why you changed (see PS1). <br /> <br />i appreciate that you may not want to go thru the hassle of finding another dr right now, perhaps repeating tests, etc. i don't think your desire to avoid conflict with him means that you have to let this action on his part just fall by the wayside, tho. if it were me, at the <b>end</b> of my next visit, i would say something to the effect of, "i don't think it is reasonable for you to ask me to do my own research on what conditions i might have; that's why i came to a dr/specialist in the first place."<br /> <br />now, on to the substance of your post. broadly, <b>myopathy</b> means any disease of a muscle. in practice, however, it is usually taken to mean a degeneration of skeletal muscle that is not attributable to nerve dysfunction.<br /> <br />the symptoms of myopathy are muscle wasting, weakness, and anomalies in various muscle fibers and cells. diagnosis is made by muscle biopsy (the test you will be undergoing), blood tests measuring the level of certain enzymes that indicate the presence of antibodies, and electromyography, a test that measures electrical activity in the muscles. many of the noninflammatory myopathies have a genetic component even tho symptoms do not appear until early adulthood.<br /> <br />some of the various noninflammatory myopathies are --<br /> <br />-- <b>mc<i><u>C</u></i>ardle's disease</b>, which i've also seen listed as <b>mc<i><u>A</u></i>rdle's disease</b>, a disorder in which the body is unable to convert carbohydrates into the sugar necessary to provide immediate energy for the body;<br /> <br />-- <b>myotonia congenita</b>, a disorder evidenced by spasms and temporary rigidity of the muscles after they have been at rest or when an attempt to move them is made;<br /> <br />-- <b>nemaline myopathy</b>, a nonprogressive muscle weakness most obvious in the muscles that are closer to the middle of the body and characterized by the presence of a specific configuration of cells;<br /> <br />-- <b>central core disease</b>, which causes delayed motor development, esp in the legs; and<br /> <br />-- any of the disorders considered to be a form of <b>muscular dystrophy</b>, all of which are characterized by progressive deterioration of the muscles that control movement.<br /> <br /><b>i am not a medical person</b> (see PS2), but it looks to me as if all of these myopathies are essentially different ways of stating "muscle pain and weakness," tho with different causes and prognoses. the more important thing, it seems to me, is whether the cause for any of them can be determined and/or eliminated, and whether the muscle problems can be reduced/controlled.<br /> <br />do you take what are called "statins" for high cholesterol? the use of statins can cause myopathy and, eventually, a compromise of liver function; obviously, then, discontinuing the use of statins might eliminate the myopathy. myopathies of genetic origin can often be reduced/controlled by exercise, physical therapy, prescription meds, devices for improving mobility such as braces, walkers, and canes, and sometimes surgery.<br /> <br />i hope you can get enough useful info from your tests to be able to decide where to go from here. i am so sorry that your dr was so unresponsive to your concerns. please keep us posted.<br /> <br />-- susie margaret<br /> <br /><b>PS1 </b>-- i could not tell if the dr you are referring to is<b> </b>your neurologist or if these are separate people; i'm not sure whether or not this matters, except that finding a new neurologist might be harder than finding a new family dr. <br /> <br /><b>PS2</b> -- correction/amendment/replacement of the info in this post encouraged, welcomed, and indeed begged for!
chucklobert replied to susiemargaret's response:
This was my first appointment with this neurologist. He is the second one I have seen. I was very unhappy with my first neurologist. I actually liked this guy quite a bit. He at least seems like he has a clue and cares about what he does. I appreciate you taking the time to provide such an informative reply. I will look into the conditions that you posted. Again, thank you very much for taking the time and providing the information that you did. Have a great day!
-Chuck Lobert
-Chuck Lobert
Report This| Share this:Non-Inflammatory Myopathy???This was my first appointment with this neurologist. He is the second one I have seen. I was very unhappy with my first neurologist. I actually liked this guy quite a bit. He at least seems like he has a clue and cares about what he does. I appreciate you taking the time to provide such an informative reply. I will look into the conditions that you posted. Again, thank you very much for taking the time and providing the information that you did. Have a great day!<br /><br /><br /><br />-Chuck Lobert
RedBear2005 replied to chucklobert's response:
I would add to Susie Margaret's generally excellent overview if I may. There is a more than passing good article on the subject of myopathy at Wikipedia. See
http://en.wikipedia.org/wiki/Myopathy
I also support and reflect Susie's suggestions concerning the use of Statin drugs. One of my brothers has recently been taken off Statins altogether by his physician, because their use in high doses has been established conclusively to damage muscle strength -- sometimes permanently. This is an issue for immediate discussion with any doctor who has prescribed such drugs for you.
Go in Peace and Power,
Red
http://en.wikipedia.org/wiki/Myopathy
I also support and reflect Susie's suggestions concerning the use of Statin drugs. One of my brothers has recently been taken off Statins altogether by his physician, because their use in high doses has been established conclusively to damage muscle strength -- sometimes permanently. This is an issue for immediate discussion with any doctor who has prescribed such drugs for you.
Go in Peace and Power,
Red
Report This| Share this:Non-Inflammatory Myopathy???I would add to Susie Margaret's generally excellent overview if I may. There is a more than passing good article on the subject of myopathy at Wikipedia. See<br /><br /> <a href="http://en.wikipedia.org/wiki/Myopathy">http://en.wikipedia.org/wiki/Myopathy</a><br /><br />I also support and reflect Susie's suggestions concerning the use of Statin drugs. One of my brothers has recently been taken off Statins altogether by his physician, because their use in high doses has been established conclusively to damage muscle strength -- sometimes permanently. This is an issue for immediate discussion with any doctor who has prescribed such drugs for you.<br /><br />Go in Peace and Power,<br /> Red
chucklobert replied to RedBear2005's response:
Thanks for the additional information. I am not on any medications and haven't been so I don't think the Statins would apply here but thanks for the thought. Still working to find out what it is. I have a muscle biopsy scheduled for the 11th. One new thing that has started in the past few days is occasional difficulty breathing, where my chest feels heavy and my breathing is labored. Hopefully they will figure out what is going on soon. Thanks again for all the info. If anyone else has any more info please keep it coming. I really appreciate it. Have a great day!
Chuck Lobert
Chuck Lobert
Report This| Share this:Non-Inflammatory Myopathy???Thanks for the additional information. I am not on any medications and haven't been so I don't think the Statins would apply here but thanks for the thought. Still working to find out what it is. I have a muscle biopsy scheduled for the 11th. One new thing that has started in the past few days is occasional difficulty breathing, where my chest feels heavy and my breathing is labored. Hopefully they will figure out what is going on soon. Thanks again for all the info. If anyone else has any more info please keep it coming. I really appreciate it. Have a great day!<br /> <br /> Chuck Lobert
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