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My 13 yr old son started falling early in May, after on off complaining of various pain-and trips to dr-since september 07. Took to dr, tested cpk and at that time was 12963, also very high alt and ast. Then tested more to recheck, levels went down and checked urine. Just had muscle biopsy done as no one can seem to know what the problem is. One calf is always painful, after any exercise is every where next day-MRI shows no muscle inflamation though. Pain in sternum area-chest xray and echo show everything OK. All levels holding high CPK is now always between 2000-5000, alt and ast do not go under 125 and go up as cpk does and aldolase is also high and fluxuating, but dont know the numbers. any ideas?

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MY SON HAS HAD JOINT AND MUSCLE PAIN FOR THE PAST YEAR WITH HIGH CPK, ALDOLASE, & AST. HEHAS BEEN DX WITH MIXED CONNECTINE TISSUE DISORDER BY IMMUNOLOGY AND RHEMATOLOGIST (PEDI). SUGGEST HE SEE A SPECIALIST.[/url]
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If they have had a muscle biopsy they are probably all ready under the care of a muscle specialist. Have they considered a rheumatological disorder or done some tests for lupus/SLE ? ?
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It may be kenndy disease.
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My CPK count is normal at 8,000 and when I am sick it runs about 12,000. I have extreme muscle pains after working out. When I was in high school I played Basketball, and Soccer and I would crawl off of the court and field. This is a gentic defect. My mother's side of the family all have elevated CPK counts. When my cousin was little they put needles in his legs and made him walk. The doctor said that it was some form of testing, but my mom said that it was torch and she was not going to put me through that.

I love to run and 6mons ago I decided that I would start training for a half marathon. However, I could not make it passed 5 miles. Even at 5 miles my legs, neck, back and arms were on firer.

I am not sure what this disorder is or if there is a cure. All that I can hope is that it is not something that I pass down to my children.
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The symptoms sound very similar to a disease I was diagnosed with a year ago, Polymyositis. It could be Dermatomyosyitis if you noticed any skin disorders. Ask your doctor to refer you to a Rheumatologist, they probably want to take a muscle biopsy..I personally had waited too long to go in (thought I had a bug and was out of shape) and it takes a longer recovery time to put it in remission. My CPK count was 15,200 by the time I went in and was severely affected physically. Prednisone and other immunosuppressants can be used for treatment.
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I'm at the hospital right now, came in Thursday evening with brown urine. My arms where in a locked pos, after a cpk check at first it was 22000 then 54000 and got all the way up to 74800. The doctors told mr that they had no clue what is going on. I've seen like 15 doctors in the last few day if not more. So they been giving me fluids 2 different bags a hour, that's a lot of bags in 3 days. My level is now 56000 so it's going down but slow!!!
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my cpk has been as low as 480 and as high as 1200.  I suffer from lightheadedness too to the point where I feel like I will faint.  For years the cpk didnt bither me.  I played sports and was good physical condition, but lately I dont feel right.  I am scared to do anything bc of fear of fainting.  The cpk is the only thing that is wrong with me everything else came back pretty normal. 
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You just described McArdle's disease - glycogen storage disorder
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I would have Mitochondrial Disease looked at. Our daughter has been a mystery for years and similar abnormal labs. mtDNA testing and testing of the nucleur mt may help. GENE DX was the lab performing our tests. Fran Kendall is a Mito Dr. in Atlanta, GA that can do virtual consulting. Cleveland Clinic has a strong Mitochondrial team as well. If you can find a Geneticist or Neurologist with Mitochondrial background, they may help.
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My son also had this same thing but started differently. It started 2 weeks before his 13th birthday. He was complaining of pain in his upper arms (I thought he may have pulled a muscle doing karate; which he has done since the age of 4). I brought him to the Children's ER in my area, his CPK level was 19287 and AST 290 and ALT 470. He was admitted into the hospital for rhabdomyolsis and his CPK levels continued to rise as high as 89000 then slowly returned to normal. My son spent 2 weeks in the hospital for this and has recurrent eposides. With CPK levels over 500 he should be in the hospital receiving IV treatment as rhabdomyolsis is the breakdown of muscle tissues and can cause kidney damage. My son's muscle biopsy also showed nothing.
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Wow really so how are u doing now
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I have a form of MD called McArdles. everything described above sounds exactly what was going on with me. I had a muscle biopsy done to confirm it.

I over did it this weekend (Saturday) and my urine was the color of a coke, legs were swollen and barely could move them. I went to the doctor on Tuesday my CK was 12,500. My normal is 800-1200. I say to anyone.. be your own advocate and get answers no one wants to go in to Renal failure

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