CPK Levels and Twitches

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DannyKilleen

Member
Hello All

I have been told in no uncertain terms that my fasciculations/twitches are benign. I have been seeing a Neuro for about 4 years. He is sick of me!!

I have mildly elevated CPK. Over the last 6 months ofr so, I have scored 515, 350, 615 and latest 500. None of the scores were taken after exercise or injury.

How does this compare with others here? My GP has referred me to another Neuro for a second opinion, but this is on my insistence. Both he and the original Neuro say I should forget it.

Thanks to you all for this wonderful site which has given me such hope.

Danny
 
Hi Danny,

You're not alone. My cpk has been elevated - in the 250 range to low 300's. My Dr. was checking it when I was on a statin drug - pravachol. My fascics (primarily calves) started 9/02. I've also seen a neuro and had emg and ncs -done in 12/03 and all has been negative. I stopped pravachol 8/03 hoping things would improve and they haven't (yet!) My cpk tests also were not taken after exercise or injury. I now have achy feeling calves and wonder if the fasics simply make my muscles feel achy and tired and if they also aren't the cause of the elevated cpk. Like you, this site is a godsend - just knowing that we're not alone. I just wish I knew of something that would help alleviate the fasics and wish I could have hope that things would get better. Mine started 3 months before I separated from my wife...so this was a period of heavy stress and tension. I think that I internalized it all and it came out physically. Now how the heck to stop it?!!! Another real concern is whether or not this has actually really gone away for anyone.

Best to you!
Tom
 
Danny - are you on a daily aspirin program? Did you consume alcohol the day before the tests were taken? These are just a few of many factors which can cause "elevated" CPK readings.

My Dr. explained that CPK readings are a very non-specific indicator. The only time Dr.'s become concerned are when the readings are in the 1000's.

Dale
 
hi Danny welcome to the board. I to have had an elevated cpk it fluctuates between normal and high my last cpk was 159 I have been between 141 and 259 for the last 9 months. docters haven't been at all concerned and I was really concerned until I found this site. You will see there are alot of us with high cpk's. I hope this helps good luck.
Paul
 
Thanks to you all, so much, for replying and giving me some answers.

As for internalising stress, well I think that is a likely one. All this started for me about 5 years ago (just when my marriage was rocky and my wife fell pregnant...) so I KNOW stress can kick it off. I too have wondered if the fascics can cause the elevated CPK.

Why do the doctors always think it is ok to say "Don't worry, its nothing...."?
 
Drs. think it is ok to say don't worry it's nothing, because they're not the ones going through it. I find it incredible how poorly most drs. relate to their patients. If they would take an extra two minutes and communicate with us on a human level, I think the world would be a better place.

Oh well, here's to wishing!

Take care,
Gary
 
A lot of BFS'ers have elevated liver enzymes. My ALT is elevated, but I'm not sure about my CPK level. This subject has come-up many times before and it was pretty well taken that a lot of us have one or more livere enzymes that are elevated.

This "can" also mean some sort of muscle disease. Not ALS, but a NMD of some sort, such as one of the many Muscular Distrophy diseases, AND it can also mean absolutely nothing at all. Drinking too much can elevate liver enzymes and activity as well, so it really doesn't point in any definate direction when trying to diagnose BFS or some type or Muscular distrophy.
 
Rob, CPK level checks for muscle damage, they wouldnt offer one unless you asked for it, or your doc thinks you have something that is damaging your muscles.
 
Creatine Kinase was part of normal blood work for me I didn't have to ask for it.Mine was 320 (which I read was high) but the doctor said it was normal.I checked wikipedia and it lists 320 as the upper limit for men.
 

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