Question about CPK

I am 22 years old and have been "twitching" for almost 8 months now.  I have been diagnosed with Benign Fasciculation Syndrome (BFS) after having a clean EMG/NCV at 6 months.  My major symptoms are muscle soreness in my thighs and shoulders, cracking joints all over my body, exercise intolerance/fatigue, and minor cramping in my feet.  

A month and a half ago I had my blood drawn and it revealed mild hypothyroidism (TSH of 9.70), high cholesterol, and my blood pressure was high as well.  The doctors then ordered my CPK levels to be checked.  The test came back and my CPK level was at 5005, Myoglobin was at 178, Aldolase was at 43, and AST (SGOT) was at 84.  The doctors said it could be a result of the hypothyroidism or the fact that I jogged a mile approximately 60 hours before the blood was drawn.  The doctors said not to worry.  I saw an endocrinologist a week later who said there was no way that the levels could be as high as they were without something else going on.  She ordered the blood to be re-drawn and within a week's time all of the muscle enzymes were back in the normal range.

The doctors have all more or less dismissed there being a problem with the blood work.  I, on the other hand, am greatly concerned.  Like many other people experiencing fasciculations, I am concerned about ALS (biggest concern) and/or another form of muscular dystrophy.  I would greatly appreciate any thoughts you may have on what could be causing this and what would be best to do next.  Would I be correct to assume this is most likely not Benign Fasciculation Syndrome?

Thank you

[CCF-Neuro-M.D.-JT]

I agree that those levels are impressively high and should be evaluated with another set at some time down the road just to make sure everything is ok. These lab values are NOT AT ALL typical of ALS, but if real do sound like a muscle disorder. It is somewhat reassuring that you've had a normal EMG. Your symptoms of muscle twitching could still be BFS, but given these recent lab results and symptoms of muscle soreness I would consider seeing a neuromuscular specialist at a major academic center for further evaluation if the labs come back abnormal on repeat testing. Or if you prefer, you could just go ahead and get a second opinion now for peace of mind. Good luck.

[Terry-Sue]

I have been going through the same thing for almost 2 years.
I have finally gotten in to see a neuro/specialist who specializes in rare muscular diseases.

My CPK results are high, so she has ordered a muscle biopsy to check for MYOSITIS.  This is a rare (2-10 per million/annually diagnosed) muscular disease where the muscles attach each other.

I would insist that your doctor request a muscle biopsy.  (mine most likely will not be until next spring some time.

I have not been able to find a whole lot of information on myositis on the internet.

[Kit1]

If you are looking for reliable information about diseases, try a site called eMedicine (http://www.emedicine.com). The articles are written by actual MDs, and are even read by medical students studying for their boards. They also contain references to academic papers so you can go look up further studies.

There are several good articles on myositis.

[Annika]

Dear Craig,

I have, essentially, all the symptoms you mention, although in my case it has happened sequentially, muscle group by muscle group, and is related to damage that is occurring within my spinal cord from a known disorder.  

This is how it happens for me.  I have a tethered spinal cord (stuck by scar tissue), which means that I get nerve damage within the cord from tension/pulling that occurs during normal, everyday activities.  I'm not saying you have this at all, because you have that elevated CPK level, which makes one think the basic problem is in the muscle itself.  However, I do have experience with the symptoms of gradual muscle dysfunction and weakness.

I have fasciculations all the time, mostly when I'm in positions that put tension on my spinal cord (like sitting).  Sometimes the tension results in an actual nerve injury.  Then, a cycle of changes will start which leaves that muscle fundamentally altered.  The affected muscle group will fasciculate much more frequently.  A feeling of heaviness will set in, and also an ache, as if the muscle were exhausted from overuse.  The muscle gets incredibly fatigued, just from normal, everyday use (when my thighs became weak, I noticed they got tired just from standing doing dishes).  

After several weeks, the muscles will start to shrink up. For me, because the weakness is caused by upper motor neuron damage, the muscle also becomes stiffer, and the tendons tighter (low-level spasticity).  This stiffness is generaly not typical of muscle weakness and wasting due to intrinsic muscle disease or lower motor neuron disease (like ALS, as one extreme).  The wasting and weakness persist, despite whatever physical therapy I do.

The key point that I wanted to pass on are the changes in joints that inevitably seem to happen when there's muscle weakness and/or muscle imbalance.  Every time I've had these changes to a muscle group, the next symptom has been crunching/snapping/popping within the joint normally controlled/supported by that muscle group.  When my thighs became weak, my knees buckled and crunched.  Changes in the buttock muscles led to changes in the hip joint, which "pops" in its socket constantly.  Wasting in the ankles/feet has caused constant snapping/crunching of the bones in the feet when I walk.  Wasting in my shoulders and around the neck has caused crunching around the shoulder socket/shoulder blade, as well as a lot of brand-new crunching within the cervical spine.  All of this happened methodically and sequentially - and very quickly, since it always follows a nerve injury in my case.  It takes only a few weeks for this full cycle to be completed.

I mention all this because I know that many doctors are not taught the connection between muscle dysfunction and the crunching/popping/snapping that occurs in the joints as a result.  My own feeling, based purely on my own experience, is that this phenomenon seems to relate to two factors.  One is that there may simply be less muscle padding, so the bones/tendons are no longer separated from one another as they glide past each other during movement.  When they hit one another, they make snapping noises.  The other is that losing the full strength of the normal muscular support around the joint causes essentially the same problem, but that the grinding of the joint is more a result of things collapsing in on one another, and not having the correct muscular function to coordinate the smooth gliding of the joint.  

Again, not to say that you have anything like the neurological disorder I do.  Good luck with the doctor's answer, and definitely check out e-medicine.  

Sincerely,
Annika

[rad678]

A related discussion, cpk als was started.