Avatar universal

High CK, Myositis?

I have had chronic elevated CK for no obvious cause, and if I exercise or do any even mildly strenuous activity,
it rises dramatically.  Pain can be severe or very mild, but fairly constant.  I have recently developed pain and movement problems in both shoulders, and it is worse in the right arm, muscle pain travels down the arm and in both their are a kind of burning sensations at times, like battery acid is in there.  Xrays and Ultrasounds of the rotator cuffs show nothing, bone is better than good, not a speck of arthritis.  I have had been found to previously
have a low acid maltase but not to the point of Pompe or anthing, muscle biopsy showed fairly normal, and most bloodwork shows up normal, other than the CK, occassional elevated Sed Rate, and chronic low iron, not quite anemia but close, and a history of autoimmune thyroid for about fifteen years but TSH is fine, my anitbodies are
quite plentiful I've been told, more than most have ever seen.  I have had numb toes for years, no dx, no diabetes.
Any insight, direction I could take would be most welcome.  I have had one specialist who's care I am not under suggest Polymyositis as a possibility.  Thanks so much.
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Avatar universal
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

It sounds like you have had extensive testing for your elevated CK with pain without a definitive diagnosis. With a normal muscle biopsy, polymyositis becomes less likely; polymyositis has specific pathologic findings that are readily identifiable by an experienced pathologist.

Medications such as statins (cholesterol medications), and other even over the counter or herbal medications can lead to elevated CK with muscle cramps.

There are several types of muscle disorders that can lead to intermittent elevations in CK with intermittent worsening pain. These include glycogen storage disorders such as Pompe, which you mention above, but also others, that may be associated with a normal routine muscle biopsy, but that can be diagnosed with specific staining. Other muscle disorders that would require special stains to diagnose include some of the dysferlinopathies and other rare muscle disorders. Disorders of fatty acid metabolism as well as some mitochondrial disorders can lead to elevated muscle enzymes with muscle cramps as well.

An elevated CK with muscle aches may also suggest an inflammatory disorder called polymalgia rheumatica, which is a rheumatologic disorder, but this diagnosis is rarely made if the ESR is not consistently elevated. Unlike the muscle disorders I discussed above, polymalgia rheumatica is one of the disorders that would lead to prominent shoulder pain (i.e. pain around joints rather than just within the muscles).

There is a disorder called idiopathic hyper-CKnemia, in which there are intermittent elevations of CK without clear cause.

Given you have elevated thyroid antibodies, an autoimmune disorder that is leading to myositis should continue to be considered; evaluation not only by an experienced neuromuscular specialist but also by a rheumatologist is recommended. If you have not been evaluated at a tertiary care center (a university hospital etc), evaluation at such a center is recommended; re-review of your muscle biopsy slides as well as other testing such as EMG/NCS may be indicated (which I'm sure you had but sometimes this type of test is operator-dependent, and yields more information when done by a particularly experienced operator).

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
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Avatar universal
Thank you so much for the very very useful information.  Most things if not all have been performed, such as genetic testing for Dystrophies and newer tests for Pompe.  
However, the handful of things you mention as rare muscle disorders were not to my knowlege.  Mitochondrial disease I'm told is a consideration but has not had any further attention.  I've had three EMG's done, showing very mild nerve damage but no conclusive reason why.  I take no meds or herbs to elevate CK.  I have been evaluated at a University center, and I can pass along these ideas for consideration I would think.  My Endocrinologists have described my situation as a rare metobolic myopathy, but have only said that as far as I know, to describe that situation.  I will also ask for a Rheumatology examination.  Thank you again for all the helpful information, it gives me something I can perhaps proceed with as suggestions.

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