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Rhuematologist is stumped...

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Posted 2/21/2017 1:45 AM (GMT -5)
So my LLMD is having me also following up with Rheumatology for CPK that is still elevated and still going up after a year worth of treatment. I had a followup appt today and he told me that I have stumped him. He has been practicing for 35 years but with my cpk when they look at where the cpk is coming from the isoenzymes are coming back as "macromolecule 1" instead of the usual muscle or brain tissue cpk.

He told me that in 35 years of practice he has never had someone come in with an elevated cpk macromolecule count so he is sending me to a neuromuscular M.D. to look into it.

My question is has anyone else out there who has had an elevated CPK when/if they looked at the isoenzymes did theirs show up as macromolecule 1 as well? there is not even many conclusive studies that have been done on it either. This rheumatologist is also not blowing off Lyme's as a cause of all/most of my symptoms but has just never seen an elevated macromolecule before so says he doesnt want to miss anything either.

Any thoughts out there?
Nick
Posted 2/21/2017 10:35 AM (GMT -5)
This might be helpful: /www.ncbi.nlm.nih.gov/pmc/articles/PMC1031843/

This isn't really related, except it's how I found the above article, so it helps explain some of what might be going on:
"CPK is the abbreviation for a blood test called creatine phosphokinase. CPK is an enzyme found primarily in muscles. This includes the muscles in the heart.

Any muscle injury or damage can cause a rise in the blood level of CPK. For example, a person would likely have a high CPK after a fall. A high CPK also occurs when someone has a heart attack.

Inflammation in the muscles, called myositis, will raise the CPK level. Usually people with myositis have aches and pains and muscle weakness.

Some people persistently have a CPK that is higher than normal because of decreased excretion of CPK through the kidneys. This is seen most often in people with kidney disease."
/www.sharecare.com/health/lab-tests/what-have-high-cpk-reading
Posted 2/21/2017 3:07 PM (GMT -5)
bump for nberg
Posted 2/23/2017 1:41 AM (GMT -5)
Thanks traveler,
It just stumps everyone that it is the macromolecule 1 that is elevated and they say normally in muscle disease it would be cpk-mm or cpk-mb. good info though I will continue to look.

Nick
Posted 2/23/2017 10:39 AM (GMT -5)
I was recently tested by a rheumy and one of the tests was CPK. He said if that had been abnormal he would have referred me to a neurologist, so thought I'd pass that along. As Traveler mentioned myositis, I believe that's what he was looking for.
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