CPK high (CPK-MM, not MB) is this an autoimmune disease?

[marksacc]

I am a 42 year old male. A year ago I was having chest pain. I went to th3e hospital and my CPK was high but it was my CPK-MM, not MB. I follwed up with a cardiologist who did various test and I ended up with a blockage that was taken care of, but it has not helped with the chest pain. I still get the pain in my left chest as well as my left shoulder and trap. My CPK-MM remains high at about 1700. My cardiologist thinks tha pains might be related to an autoimune disease and not the heart. He ran blood test, ANA, CBC ,RF ESr and a liver panel but they were ok. He suggested that I seek Rheumatologist. In addition, recently the left side of my neck, jaw and face have been getting swollen and I have had extremely bad pain in my left foot for a couple of years which may or may not be related. Any suggestions on what it might be?

[John Kenyon, CNA]

Hello -

Something is keeping some muscle or group of muscles inflamed and this inflammation probably was related to the original heart problem, but continues on afterward, and so seems likely an autoimmune problem. It's impossible to say what specifically it may be, and sometimes there are new variations that surface that aren't well-recognized. Even though your ANA came back normal, which sometimes happens, you can still have an autoimmune problem. This is part of the reason they are so frustrating and sometimes difficult to diagnose (and so treat correctly). A rheumatologist would seem a logical next stop in figuring this out. I suspect the other problems you mention, those that are more distant from the heart, are likely related to whatever the original cause of muscle injury, so I'd definitely second the suggestion to see a rheumatologist next.

Best of luck to you. Please keep us updated as well.

[marksacc]

Thanks for the suggestion. I followed up with the Rheumatologist and he did various blood test and xrays but did not find anythin yet. I believe he looked mainly for Lupus or Rheumatoid arthritis but the blood test came back negative. The CPK still came back at 1,494 and my ALT and AST liver test were high. The doctor took more blood to check for other test and he wants me to go for a bone scan, not sre what for, and an EMG test on my limbs, I am not sure why. I guess I should have asked more questions. Someone mentioned that he might be looking into one of the muscular dystrophies. Not sure. Any suggestions on what the test two test might be looking for? I guess it is easier to ask questions here than when you are sitting in front of the doctor and he is rattling off a lot of different things.

[John Kenyon, CNA]

I'm not sure why the bone scan either, although it may tie in with helping to visualize deterioration of muscle/ligamental tissue where it attaches to the bone; I'm sure you're right about the motive for the EMG at least. Neuromuscular problems could well be exposed that way, and if so, all the better, as a treatment plan can be formulated. For that reason I actually hope it turns up something so you can begin to get things turned around. Otherwise it's back to the detective work.

It is always easier to remember what you "should" have asked after you've been there, as things move too quickly too often. I think we all have that problem.

Keep us updated by all means.

[marksacc]

I have not had the bone scan or the EMG as of yet. The Doctor decided to wait at the moment. Instead he had me go for an MRI of my bicep and thigh because I have been having weakness in them. The MRi's show nothing. In addition, my CPK is now 2,046 and my Aldolase has gone up a bit as well as the liver enzymes. A couple of days ago I had pain and weakness in my shoulders, traps and stomach muscles. The Doctor is sending me for the EMG now. He stated that he does not think it would be Muscular dystrophy because of the age of onset and the fact that I was rather muscular to begin with. But if the EMG does not show anything he will probably refer me to a Neuromuscular doctor. Any ideas what it could be and what the neuromuscular doctor would be looking for?

[John Kenyon, CNA]

I'm frankly puzzled at this point, but I do realize there are a whole group of relatively obscure muscular and neuromuscular diseases that would need to be ruled out. At this point it's probably best to wait and see what the specialist in this area has to say before speculating more. I'm happy to know your doctor doesn't believe it's MD at least. There are a lot of variations on that theme that are more amenable to medical management. The continued high CPK is the most puzzling part of this for me, but I'm sure a specialist in this area will probably come up with a list of possibilities, then set about ruling them out. This could be the very thing you've been waiting for, and I certainly hope this consult helps to clear up the mystery.

Please continue to keep us updated, and best of luck to you with this.

[marksacc]

Thanks for the encouragement. I noticed sometype of wound on the chin. It is circular in shape and is sunk in. It looks almost lide there was a scab that got picked off and the hole is there until it heals. So originally I did not think anythinf of it. The problem is that tit still looks the same. It has not scabed or started to heal. I forgot it was there until last night so I did not mention it to my Rheumatologist as of yet. I don't know if I should call and go in to show him or wait until my appointment on Feb 2nd. What would be your suggestion? Do you know if this is sympomatic of anything related to the muscle problem?

[marksacc]

I appologise, I believe my prior reply stated that I had the wound on my chin, it should say shin.

[Tom Plamondon PA-C]

Hello,
Were the deep tendon reflexes (DTR) checked in the arms and legs?
Its another piece of the puzzle to help differentiate between myositis (normal DTR) and neuropathy (decreased DTR). Symmetry also matters. Unilateral symptoms are more typical of neurological cause.
Are numbness or tingling?


Differential diagnosis includes but not limited to:
polymyalgia rheumatica
polymyositis (check anti-Jo1 antibody)
peripheral neuropathy
cervical spine pathology (disc, spurs, arthritis)
ALS
myasthenia gravis


Consider checking TSH and free T4 (thyroid), EMG, cervical MRI too.

[marksacc]

Thanks for the information. I do not know if the DTR was checked or not. I do not have any tingling or numbness in the arms or legs. I did have an MRI of my cervical spine and it was fine. I am going to an EMG test of my lower extremities this Saturday and go back to the Rheumatologist on Monday so we will see how that goes. I have noticed that recently when I go out in the cold, my fingers hurt. Usually they would just feel cold, now they actually hurt. I do not know if it is related at all. Any suggestions. Thanks

[marksacc]

I forgot to mention that my thyroid has been tested and all test have come out ok.

[marksacc]

I had the EMG done on Saturday. According to the Neurologist, all of the muscles showed abnormal results, calfs, thighs, forearms, biceps and shoulders. My appointment with the Rheumatologist had been rescheduled for Thursday so I need to wait until then to talk to him. Does seem like it points to a specific disease?

[Tom Plamondon PA-C]

Hello,
With your results (abnormal EMG, high muscle enzymes), polymyositis should be a consideration.
Raynauds syndrome is often associated with auto immune problems.
Keep us posted.

[marksacc]

Based on the EMG results and the blood work the Rheumatologist believes it is polymyositis. I had a muscle biopsy on my thigh a little over a week ago and waiting for the results. Any idea how long it takes and is the biopsy definative for diagnosing polymyositis? Thanks

[Tom Plamondon PA-C]

Hello,
Yes, muscle biopsy helps definitively diagnose polymyositis. Clinical signs and symptoms, EMG, muscle enzymes and auto antibodies should also be considered.
The muscle biopsy should be taken from weak muscles and compared to contralateral stronger muscle.
Take care and let us know how things turn out.