Old 09-23-2009, 01:12 PM #1 (permalink)
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Default CPK levels?

Hi-- does anyone know if steadily climbing CPK levels are worrisome at all, even if they still fall within normal range? the doctors keep repeating this test, since things started last winter or early spring. I started out on the low end of normal and then inched up a bit and now I am in the middle of normal. I haven't seen the doctor again for a folo-up, but the nurse who gave me the results said as long as it's within normal range, everything is fine.

just wondering.

thanks--

Sandra
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Old 09-23-2009, 01:17 PM #2 (permalink)
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Default Re: CPK levels?

All I know is that there are many things that can cause cpk to fluctuate but it has to elevate quite a bit before any alarm bells start going off with the doctor. As long as your levels stay within normal, I wouldn't worry.

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Old 09-26-2009, 02:50 PM #3 (permalink)
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Default Re: CPK levels?

Do ppl who are later diagnosed with als have elevated level of cpk and ana?
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Old 09-26-2009, 03:54 PM #4 (permalink)
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Default Re: CPK levels?

hi sandra,normal range is good and means no muscle damage.
if deterioration is seen they may repeat the test as things progress.


my cpk level was raised when tested at the start of my pls,though my neuro said he had seen worse(suppose they were bad but not that bad)
i have never given any thought about the cpk level only that it confirms what i can feel..........my muscles are buggered .
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Old 09-26-2009, 04:28 PM #5 (permalink)
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Default Re: CPK levels?

My cpk and sed rates were elevated but the doc said it was kind of like having a temperature of 99 point something; nothing to worry about. My muslces are buggered, too!
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Old 09-26-2009, 04:32 PM #6 (permalink)
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Default Re: CPK levels?

My CPK levels have always been somewhat high, which has been attributed to my extensive running, as I was doing several half marathons and training for a marathon. When I first started experiencing ALS symptoms (speech slurring) and the doctor mentioned ALS, I did some research and learned about a similar but much less severe condition called spinobulbar muscular atrophy, SBMA, also called Kennedy's disease. SBMA is characterized by very high CPK levels. However my levels were only slightly above the normal range, while SBMA levels are often several times normal. Anyway there is a genetic test for SBMA, and I requested it, but it turned out I don't have SBMA.
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