High CPK (~15,000) levels HELP PLEASE

[ScarlettMLynn]

Around April, my fiance lifted for the first time in a long time. He is 24, and has been active throughout his life. The next day, his arms were swollen, which was expected. However, the swelling persisted and proceeded to swell two inches larger, to the point where he could not straighten his arms. His eyes also began to swell. We went to the ER after he developed a rad patch on his bicep. They checked his enzyme levels (CPK) and they were through the roof (~15,000). They tested his kidneys as well, and they were fine. They originally suspected rhabdomyolysis, but ruled it out. The final diagnosis was a possible viral infection after he passed a nerve test. They flushed him with sodium bicarb, and gave him a regular IV and he was released after 3 days. He followed up with a specialist (which I am assuming they just tested his blood for his enzyme levels) and they told him he was ok.

However, today was the first time he attempted lifting again, extremely light. He came home and his eyes were swollen yet again. I am not sure where to go from here. I realize that it is difficult to diagnose from a simple message, but I was hoping you may have came across something that may sound familiar to you.

Should we consider an endocrinologist? I am just scared and feel as though the protocol for his symptoms was handled poorly. They were only focusing on his enzyme levels and not the underlying problem. The next step was a muscle biopsy if this nerve test results came back abnormal, since they didn't a biopsy was not ordered.

I appreciate any advice you have to offer. I am just concerned, and I have no clue where to go from here.

[patsy10]

I'll ask her about it.  She is very interested in anything related to it.  Thanks

[BillieJC123]

I was on methotrexate and steriods for close to two years because of the MCTD = Mixed Connective Tissue Disease and it did nothing for me.  I was faced with a few options at trying to just slow it down a bit because as you know there is no cure and really no effective treatment.  I have decided to try the IViG treatment and we are in the process of finding a place closer to home to do it so I don't have to travel the two hours from home in order to have it done.  There was also the suggestion of chemotherapy, but the more reading I have done that didn't seem worth it either.  I joined the National Myositis foundation and I would be happy to send you the link so your friend can join as well.  There are a lot of benefits to joining actually.  Not only our disorders marked under the most 40 rare ever but they will put you in touch with anyone who lives in and around your area that has the same or close to the same disorder as you do.  Since they are so rare there are no support groups per say so this is their way of making sure people get some support from offline.  Also after joining you get newsletters with updates of the latest research and etc.  I know the doctor I go to whatever my insurance isn't covering The Muscular Dystrophy Association is because my disorder is so rare just with your friend.  Just let me know.

[patsy10]

Billie, how are you doing with treatment?  I'm just curious.  My friend has dermatomyositis or polymyositis  they're not sure which one.  She is on steroids and methotrexate.  She's been in treatment for about 11 months.  She still seems very sick to me.

[BillieJC123]

I too have had elevated CK numbers for over two years before I had my muscle biopsy.  Then was DX with Myositis with full body inclusion . I would, depending on what doctor he is seeing, push for a muscle biopsy because a lot of those other tests can come back normal.  My first EEG test did but no medications ever brought my CK numbers down.  The second EEG test that was done they found the most nerve and muscle damage in my back.  My first biopsy was done in my right thigh muscle where they found I had a myopathy but didn't know what kind so they had to send me to a big time nueromuscular specialist who did the second biospy on my back and found what I had.  Good luck and please let us know

Billie

[patsy10]

My friend had nerve studies, EMG MRI's etc...They were all normal.  Her CPK was also normal.  They found a serious autoimmune disorder (polymyositis) on a muscle biopsy.  I think he does need the muscle biopsy.  True, most people with muscle disorders have elevated CPK and other findings.  She had all normal tests.  The biopsy was done to look for metabolic or mitochondrial disorders.  Even the doctor was surprised with the results.  I would push for the muscle biopsy.