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Date of last update: 8/21/2017.

Forum Name: Rheumatology Topics

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

 marksacc - Sat Nov 08, 2008 9:49 pm

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 - Sat Dec 06, 2008 8:40 pm

User avatar 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 - Tue Dec 16, 2008 2:08 pm

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 - Tue Dec 16, 2008 5:54 pm

User avatar 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 - Fri Jan 16, 2009 1:30 pm

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 - Fri Jan 16, 2009 11:10 pm

User avatar 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 - Sun Jan 18, 2009 12:12 pm

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 - Sun Jan 18, 2009 2:31 pm

I appologise, I believe my prior reply stated that I had the wound on my chin, it should say shin.
 Tom Plamondon PA-C - Mon Jan 19, 2009 3:12 pm

User avatar 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)
myasthenia gravis

Consider checking TSH and free T4 (thyroid), EMG, cervical MRI too.
 marksacc - Thu Jan 29, 2009 1:55 pm

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 - Thu Jan 29, 2009 1:57 pm

I forgot to mention that my thyroid has been tested and all test have come out ok.
 marksacc - Mon Feb 02, 2009 2:59 pm

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 - Wed Feb 04, 2009 8:00 pm

User avatar 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 - Thu Mar 05, 2009 11:05 am

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 - Mon Mar 09, 2009 11:50 am

User avatar 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.
 marksacc - Mon Mar 09, 2009 3:43 pm

I got the results of the biopsy and the doctor stted that it was not what he expected. there are no indications of inflamation and that there was denervation and something else that suggest neurological pfroblem. He is recommending me to a Neurologist for testing. He suggested it might be a neuro-degenerative disease. Any suggestions.
 marksacc - Wed Mar 11, 2009 4:57 pm

The diagnosis of the biopsy states - Rare atrophic myofibers in skelatal muscle sample without inflamation or myofiber necrosis. The notes state there is a slight suggestion of a neurogenic process. The atrophy has some features of denervation and there is some clustering of type 1 myofibers, although not enough to be tru fiber-type groupoing. There is also type 2 clustering but this sometimes seen in the type of muscle biopsied (thigh). There are also Neuclear clumps. The microscopic description states - This skelatal muscle sample has no inflamation. There is no nyofiber necrosis or regernation. Internal nuclei are mildly increased in number and there are occasional muclear clumps and a rare nuclear chain. The myofibers do nto contain vacuoles or inclusions. Most of the myofibers are of normal size and shape, but there is focal limited atrophy. A rare rounded myofiber that is smaller than most noted and there are a few isolated angualted atrophic myofibers. In the paraffin section, ther is a small group of angulated atrophic myofibers. There are no taget fibers. There is slight periphial accentuationof staining with the NADH stain but isw interpreted as within normal findings. Than is goes on to talk about the typing descibed in the notes and that other test were normal, PAS, fat, edomysial. It shows a small zone of myotendinous sinertion. The blood vessles show slight prominence of capilarry was as seen with diabetes mellitus. The Rheumatologist has reffered me to a Neuromuscular specialist. The next appointment is six weeks from now. Any thoughts on what it might be?
 John Kenyon, CNA - Thu Mar 12, 2009 11:07 am

User avatar Well. That is certainly not something one expects to hear, but it may not necessarily be a terrible thing. It is rare enough to warrant not trying to hang one of the more commonly known labels on it as yet, since it warrants further study and the pathologist didn't connect it to any of the more "popular" demyelinating diseases. Still, it could be a limited or localized response to one of those diseases, most of which are at least managebable, although rarely are these technically "curable." Most do respond to medical therapies. You'll no doubt be hearing more from your doctor about this, and about which group it falls into (or if it's so rare as to be unique). Treatment will probably be planned around the group of disorders it most closely resembles. Please keep us updated about this.
 marksacc - Fri Mar 13, 2009 9:49 am

Thanks for the info and encouragement. It would be nice if it was localized, but according to the EMG I had, my calfs, thighs and shoulders are affected. I get a little depressing to still not know what is wrong. Not that I wanted polymyositis, but at least I thought I was at the point where it would finally be treated. Now I feel like I am back a the beginning. Also, at least I knew the myositis would have been treatable. I am assuming that whatever it is, it's treatable but you always worry. Some days I feel pretty good while other days I have trouble getting up from a sitting position. I actually go up stairs on my hands and feet when it is bad. Those are the days it is the hardest to stay positive. Again, thanks for the encouragement and I will keep you updated.
 greenwood - Fri Mar 20, 2009 3:16 pm

I am not a medical professional. I know very little about you or about medicine but I just watched a program where someone spoke of many of your symptoms (including the swelling, which isn't mentioned in polymyositis) and this person ended up having scleroderma. Has your doctor tested for this autoimmune disease? It can sometimes allude them.
 John Kenyon, CNA - Sat Mar 21, 2009 9:43 pm

User avatar I am sorry you didn't get a result you could hang your hat on. I know very well what it's like to "want" something concrete, at least, so you don't have to wonder and worry and can get to the treatment plan and start feeling better. This does sound pretty odd, and myositosis would have fit, but if it's more widespread then it may be an obscure autoimmune disease. Once it is identified it will be easier to deal with and there will likey be some therapy that will improve the ratio of Good to Bad days. Please do keep us updated. Things are bound to break your way before too much longer.
 John Kenyon, CNA - Sat Mar 21, 2009 9:46 pm

User avatar For Greenwood:

Thanks for adding your thoughts to the thread here. While scleroderma isn't known for its denervating properties, I honestly don't know why, since it should be somewhat disruptive in that area. It's certainly one of many autoimmune diseases that should be ruled out, and this can be done at a very basic level with ANA testing. It's definitely worth consideration, even though the more "interior" parts of this don't seem to fit the picture. Thanks again for your helpful (and very timely) passing along of this idea!
 marksacc - Sun Mar 22, 2009 1:41 pm

I do not know about Scleroderma, I think my Rheumatologist would have picked it up. He checked my for a whole bunch of antiboldies which I think that was one of them. The other night I noticed that my left calf muscle moves by itself. I was sitting relaxed and I see it moving in various places. It was almost like something was underneath moving around. So I started looking at my calfs and noticed that the right one is considerably smaller than the left one. Which is strange since I am righty, you would think that they would either be the same or the right one would be bigger. The size of my calf worried me a lot because I have always had very large muscular calfs that mostr body builders would want. Whenever anyone would see them they would ask me if I played a lot of football. I guess a lot of football players get very muscular calfs. My left calf is 21 inches and my right calf is only 19. I more worried about the movements. I read that is a sign of denervation as well. It stinks that I have to wait another 5 weeks to see the Neurologist. When you look on-line most of the diseases that you see are not too encouraging if you know what I mean. Keep you fingers crossed and thanks again.
 John Kenyon, CNA - Tue Mar 24, 2009 11:33 am

User avatar I also would think a rheumatologist would have taken scleraderma into account already. What you describe, today especially, does sound like a demyelinating disorder, and the fact that you've always had (previous to the atrophy in the right one) the calves of a football player is strongly suggestive of long-latent distal muscular distrophy, one of the less serious forms of the disease. I don't know of any "desireable" diseases, but some are less undesireable than others, and if you're suffering from a muscle wasting disease or demyelinating one (such as MS), there are worse things by far that could happen.

I'll be looking forward to an update once you've seen the neurologist, and all fingers are crossed here. Good luck to you!
 dkisis - Fri Apr 17, 2009 7:02 pm

I have been having the same symptoms increasingly for 3 years. I have been checked for MS,few brain lesions, yet not the diagnosis. The numbness,tingling, creepy crawling under the skin, extreme tiredness,and high CPK are also my symptoms!! My numbness is painful,it is just like when as a child, my toes got so cold,that when they were released from the skate, and exposed to the warmth,they hurt like heck. T he only other way I can explain the pain isit feels like when something stops the circulation, the areas go numb, and then the boold rushes back in.

I was sent to a neurologist, who after only reading the MRI center's report, rather than viewing the brain and cervical films himself, checked my knee reflex and how I walked, then----sent me homw with carpal tunnel bracesand told me to sleepwith a pillow under the top of my thighs!!! It didn't change anything.

I return to the doctor's this Tuesday, and because I know how I feel is not normal for me,I was searching the web for "painful numbness and muscle weakness", which is how I came across this site and your information. I had looked at chronic fatigue syndrome and Epstein Barr info also. I've printed out your info and am bring this tomy doctor. I have a titanium rod, and although I am allergic to metals except gold and 99% silver jewlery, this was not thought to be of a concern.

I have had high colesterol,controlled by medicine. Yet, the med was changed recently(3months ago) and in monitoring the liver, that's how we found the high CPK.

I will definitely stay tuned, and provide any information I find out.
 John Kenyon, CNA - Sat Apr 18, 2009 8:18 pm

User avatar For dkisis: What you're describing sounds very much like idiopathic peripheral neuropathy (IPN), an inflammatory process of the peripheral nerves, usually mostly in the legs. Idiopathic meaning the cause is unknown. This can cause numbness and pain simultaneously, weakness in the legs and sometimes other muscle groups, and stinging and burning pain in the feet. It can also cause inexplicable fatigue, lightheadedness, and balance problems, mostly due to gait disturbances. This is usually diagnosed via nerve conduction studies and electromyelograms, done in the same visit, which will demonstrate slowed nerve impulse conduction and some mucscle weakening and possible demyelination, again usually most prominent in the legs, though it can affect other areas as well.

The neurologist first of all should certainly have looked at the brain films, as IPN is frequently confused with early MS, but the brain films could probably rule this out.

If it is determined you have IPN the usual treatment is a nerve pain blocking agent such as gabapentin or pregabalin (Lyrica) for pain, and exercise and adaptation practice (balance exercises) to strengthen the muscles and help maintain balance, since often the patient will tend to lean, stumble (foot-drop) or otherwise get off-balance, often without realizing it's happening til a fall is invitable, which can be annoying and possibly injurious. Also, due to numbness sometimes scrapes and abrasions go unnotices.

I hope this is helpful to you. Please follow up with us after your doctor appointment. Hopefully this is something you could bring to his attention as a possibility. If not, a second opinion will definitely be in order, assuming MS is ruled out via the brain films. Good luck to you.
 dkisis - Fri Aug 28, 2009 11:40 am

Hello John,
Thanks for your reply.

My CPK is still high (401)! A fasting glucose remains 86; yet a HA1c is 6.3, so the MDs while still investigating this, are leaning toward diabetic neuropathy. I'm not convinced - more below.

The neuro exams were normal, so MS was disregarded. ALT high (41), IEP, EGRF and aldosterase were all normal. I am due for a fructosamine test, and a redo of chol pane and CPK. In '08 sed rate was high (27). My LDL and HDL are high, we've been trying to see if the different chol meds were spiking the CPK, yet it remains high even when I stop meds and exercise.

Why do I have hesitations? I have sensitivity to heat, scrapes to my skin go unnoticed at the time they occur, I'm amazingly tired, I'm noticing that my vision is beginning to blur, and most importantly if I place the slightest stress on my joints, I get a bony painless protrusion like that of an arthritic! These do not go away. Certain times, it looks like there is some swelling at my knee cap. I'm wondering about Lyme Disease? Could this be possible?
 John Kenyon, CNA - Fri Aug 28, 2009 8:03 pm

User avatar Lyme disease should certainly be ruled out (not always an easy thing to do, takes some time and detctive work), but it also sounds as though you are describing idiopathic peripheral neuropathy. I say "idiopathic" as oppsed to diabetic-related because your A1C is actually pretty good at 6.3, and not diagnostic of diabetes. You could still be prediabetic, but it would likely have no relation to the neuropathy. I would suspect some other autoimmune process, but again, Lyme should be ruled out, and MS follow ups done as well, since it also can be a difficult diagnosis.

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