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 Subject :cpk levels..... 2009-06-09 06:11:43 
NicksMommy
Experienced
Joined: 2009-01-30 02:28:05
Posts: 22
Location: 
I am wondering about the CPK levels and what they really tell us about the disease. Initially my sons was 744 and then 1187. Does the smaller numbers predict better outcome or does it even matter? Dr. Wong based her diagnosis on CPK and clincial visit saying she really thinks it's BMD. Still awaiting biopsy results to confirm BMD or Intermediate Duchenne's. Any input on CPK levels? Thanks!
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Stacy
 Subject :.. 2009-06-09 08:29:53 
kgoodfellow
All Star
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
CPK levels will fluctuate and aren't a very accurate indicator of anything specific. All it tells you is relative damaged muscle cell contents in the blood, this will vary day to day and hour to hour, depending on what the patient has been doing. It is important to note that in DMD the cpk levels are initially high and as the patient loses muscle, there is less muscle to damage and spill into the bloodstream, therefore the CPK levels will drop. Not due to any differences in progression, but nothing more than less muscle to damage. There is no such thing as Intermediate Duchenne's or a diagnosis based on CPK levels. BMD is a spectrum and everyone is different and that is what she is trying to communicate to you. What Dr. Wong is doing (which all MD doctors do) is guess based on the clues they are given. There is no science behind this guess with regard to CPK other than her experience with other patients that might look similar to her. They often state it as a known fact, when it is just an educated guess. Just be aware. There is also no genetic test or blood test that can determine the future severity, again these are all guesses. There is some study in this area with regard to genetics, but at the moment all they have are rules of thumb and they are often incorrect. I am one of those cases, so I can speak from experience. However, there is some hope that they will improve their knowledge and at least be better predicting...even if it doesn't help improve the situation. Kevin
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K. Goodfellow
 Subject :.. 2009-06-10 03:14:11 
NicksMommy
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Joined: 2009-01-30 02:28:05
Posts: 22
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Wow, so from what you are telling me and what the doctor's are telling us are two very different things as far as diagnosis is concerned. She told us that CPK numbers help determine severity and that there is an intermediate between Duchenne's and Beckers which is why they wanted to do the biopsy. See how dystrophin is being made and percentage, etc. I realize that every person is unique to this disease. I think mainly they wanted to see what his muscles looked like b/c of the type of genetic mutation he has and the fact that they haven't seen it before. Who knows. But now more questions arise from me about my son's condition. Are they not telling us the truth or avoiding things? Why they would tell us one thing and it not be so. What are your thoughts about my older son who is now 12? CPK of 53 was said to be normal. Should I just go on and not have him checked genetically? Or should I pursue this further to be certain. He seems fine other than being "lazy pre-teen" He tells me he feels fine, but I don't know.
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Stacy
 Subject :.. 2009-06-10 04:13:34 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi Nick's mom, I won't worry about your 12 year old son. His CPK are normal. With respects to your Nicholas, his CPK levels are low for duchenne's... Duchenne kids CPK numbers are much higher, in the tens of thousands at a very early age when they have much muscle. Kevin is correct in saying, CPK levels cannot determine how severe his BMD will be, only time will tell that! I think Dr. Wong would like to do the biopsy because your son's mutation is different and not common. The biopsy will give you more clues of how mild or severe his disease course will be. Best of Luck! :)
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Roxanne Mom to Nicholas (10) with BMD
 Subject :.. 2009-06-10 09:15:20 
kgoodfellow
All Star
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
CPK is most commonly used as a screening test. If it is not normal, it is an indicator to do further testing....genetic testing, biopsy etc. As a diagnostic tool CPK is a very blunt instument. They are not misleading you, but trying to convey their efforts to determine as best they can (educated guesses) the severity. There is no single test or exact method to do this, so they are using their experience and knowledge, which may be good enough. Duchenne & Becker are just broad labels for symptoms related to dystrophin protein problem. More severe is labeled Duchenne and less severe Becker...this is loosely related to the amount of dystrophin present. The actual rule for determining Duchenne or Beckers is whether the patient is still walking when they are 14 years old. If you're still walking at 14, you're Becker, if not, you're Duchenne. It's a gross categorization. Either way, it's just a convenient label for a spectrum. Something between Duchenne and Becker is just Dr. Wong's way of explaining the severity to you, there is no label, name, or specific test for it.
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K. Goodfellow
 Subject :Re:cpk levels..... 2010-12-30 02:37:26 
tammy
New
Joined: 2009-03-11 03:40:14
Posts: 13
Location: 

Hi    kevin or anyone with helpful info.
Kevin you seem to know alot of good info.
My son has nerver been diagnosed with anything but i was wondering
he is now 12 and has walked on toes since he has walked.
he was always very athletic, but becomes slower and more and
more painful all the time. legs knees , thighs, has now been told has to wear
afos again. very tight achillles, hamstrings. becomes tired very easilly, everything
i read on bmd is everything he sounds like for years. they took his cpk level a
bout 2 years ago and read in the normal range. we have been told that his
toewalking is just a bad habit and now they he has severs in his feet and
ankles and thats what is causing the pain. being his cpk came back normal.
is bmd something you think i can outrule it not being???
thanks for any info and good luck with all
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Last Edited On: 2010-12-30 02:37:26 By tammy for the Reason
 Subject :Re:cpk levels..... 2011-01-08 09:31:06 
ilj
Ninja
Joined: 2008-11-12 07:36:55
Posts: 65
Location: 

Hi Tammy, I guess another way to find out is to have an emg test... or I guess a muscle biopsy, but that's much more invasive. Does your son have any indication of using gower's maneuver when he gets up? Are his calves enlarged? These are other signs you might want to look out for.
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 Subject :Re:cpk levels..... 2011-01-10 04:48:54 
tammy
New
Joined: 2009-03-11 03:40:14
Posts: 13
Location: 

Hi

thx for replying.
hard for me to tell, seeing him everyday.
doctors and therapist he see s always say he
has large calves. he has a balance loss
and difficulty walking stairs. things always seem
to be just a little difficult for him, and just
slowly seems to be getting harder and harder.
dont want to make him go threw test if
he doesnt need them, but just not sure if
there is an answer to all of this, and its seems
like a night mare dragging on for ever.
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 Subject :Re:cpk levels..... 2011-01-20 21:05:12 
dannod
New
Joined: 2007-03-21 11:59:20
Posts: 7
Location: 

It's funny because I started to think the CPK tests were useless after a point. I mean is the level going to magically go to normal? No probably never. However I do think that if the number gets really high that can be indicative of other things.

For myself, however, mine are only now slightly higher than normal but that's because I've lost most of my muscle mass. However they're still elevated. My doctor does the test about once a year but it's as part of a regular blood test to check for anything else so it doesn't bother me.

 
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Mid 30s - Becker MD - Have my own muscular dystrophy blog talking about my experiences with Becker muscular dystrophy and also run a site about reachers with reviews about reacher tools and such.
 Subject :Re:cpk levels..... 2011-01-22 02:39:59 
BeckerMD
Ninja
Joined: 2009-08-05 11:36:07
Posts: 65
Location: Denver

CPK are usually elevated wth BMD, but are not used alone to make a diagnosis. I would push to visit the local MDA clinic to have the doctors there help you pursue an explanation.

It seems to be a muscle related problem, but could be something with similar symptoms as BMD. A genetic blood test is also another approach, it's non-invasive and will give you a definitive answer as to whether there is a genetic problem with the dystrophin gene. If that comes back normal, it's some other muscle issue. It could be a number of different muscle related issues, but MDA should be able to help you no matter which one it may be.

BTW: I would stop seeing the doctor that said that this is a bad habit. It's immediately clear they know nothing that have probably been giving you lots of bad advice and perhaps endangering your son's health.

Kevin
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 Subject :Re:cpk levels..... 2011-07-28 03:37:25 
BradRees
New
Joined: 2011-07-27 17:15:35
Posts: 3
Location: 

This is directed mainly to Tammy.

I am a 17 year old just diagnosed with BMD this year. Cpk levels are elevated at different times for example when i workout and break down my muscles they go crazy high into the thousands other times they are relatively normal. It sounds a lot like BMD, if you need another way to confirm push for a muscle biopsy.


-Brad
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