I have had a CPK around 1,500 for the last year and a half. I also have mildly high AST and ALT liver test. I have swelling and pain in my left chest, neck and jaw. I went to a cardiologist and he ruled out my heart. I went to a Rheumatologist and he checked for Lupus and Rheumatoid Arthritis which came out negative. Does this sound like it could be myositis? Or if anyone has any suggestions, it would be greatly appreciated.
hi! I know it's a month since you posted this , but I just got onto this site. You live in the next town from me. You need to see a rheaumotologist if you already haven't. My cpk levels were high and my liver was off before I was diagnosed with myositis The Dr.'s didn't pick up on it till it was too late and I got a flare up that I ended up in the hospital for 2 weeks . My CPK levels went up to 7000. I was paralized, I couldn't walk, turn over, lift my arms, and had a hard time swallowing. If you do have this and you get diagnosed and treated right away.you have a good shot at not having permanent muscle damage. I was very lucky, although I was so sick I have gotten alot of my muscle strength back. It has taken 9 months and alot of medication. Get a muscle biopsy asap! I hope it's not but the sooner you find out the better! GOOD LUCK! TLOVE
Thanks for the info. I have been going to a Rheumatologist and he has done numerous test to confirm if it is Myositis but there is no sign of inflamation in the blood but my CPK is now over 2,000 and my Aldolase and liver enzymes have gone up as well. I have been having muscle weakness in my legs and arms so he sent me for an MRI on my bicep and thigh but they do not show signs that would be expected with myositis. He is sending me for an EMG of all of my extremites but if that does not show anything he stated that he will probably refer me to a neuromuscular doctor. So as of now I still do not know what is going on. Thanks
I had my EMG test this past Saturday. According to the Neurologist all of the muscles tested showed abnormalities. He said my calfs, thighs, shoulders, forearms and biceps all showed abnormalities. He stated that he will give the results to the Rheumatologist and to follow up with him. My appointment is not until Thursday. The waiting is killing me. I am surprised that nothing had showed up on my MRI given the results of the EMG. Did anyone else have amything similar?
hi! I never had an MRI done. They did a muscle biopsy after the EMG came back bad. Have you had a muscle biopsy done? I'm pretty sure that will give you the myositis diagnoses ,if you do have it. They're probably ruling out other things first. Who are your Rheumatologists? Do you like them? I use a group affiliated with Winthrop hospital, I like them! Are you feeling very tired and weak? I hope you get your diagnosis soon and you get treated right away!!! Hopefully it's not as bad as your probably thinking!!! Good Luck! I'll be praying for ya! I've been going through this since April 08. I got most of my muscle strength back.I'm still being treated. I'm very lucky so far!!!!!!!!! keep me informed and let me know if you have anything you need to know! good Luck! TLove
I too went through this cpk was in the 7000s liver enzymes were at 150 and my cardiac enzymes triponin? Was a little elevated I was having a very slow heartbeat and felt...off I was oblivious until I made a visit to the clinic for some blood work because every hospital in nc said it was anxiety and nothing was wrong followed up with my primary and they told me run to the er. Now I had blood taken several times before this incident and no one found anything however felt horrible for 3 days before they did. Does this mean it wasn't accumulating? Because how can the 2 not be related...I drank a lot of caffeine and red bull and worked out solidly but nothing CRAZY just one time for that week. I'm 21 so they were surprised I've always and I mean always been very active in sports insanity workout eating healthy so it's nothing I did to myself but my MRI came back fine my rheumatologist is stumped I've heard muscle biopsys are hit and miss and I'm afraid to do anything whether it's having a glass of whine or a pushup due to impatience I have been testing the waters a glass once a week very lit(barely nothing) exercise ..but I can't live like this my heart echoes came back perfect as well I only smoked pot no pills no drinking I'm afraid to do that to now...ugh any ideas I want to prevent another attack but how if every doctor I see is oblivious I'm thinking it must have been something I did and don't know maybe I was dehydrated for a week or have a slight allergy to caffeine even though I had a bold coffee from Starbucks with 4 espresso shots a week prior and am a caffeineaholic..