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I know I should not worry about this blood test; most of the time I know what they are or should be. My vitamin D for the first time is normal.

 

The one that is the most troublesome is my creatine kinase (CK) went from 36 to 78. This test was run to figure out why I am falling and why my legs feel as though I have walked 100 miles going down my hallway and back. I used to stand for a long period of time; they have started  to hurt and want to go out from under me.

 

If anyone has this problem I would appreciate  to know what they did.

 

I do have peripheral neuropathy in both legs and arms and my sclero doctor is considering that might be the problem. I just do not know why my CK would jump that much in a year.

 

Thank you Quiltfairy 

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Hi Quiltfairy,

 

Sorry to hear you've had worrying blood test results for your CK.

 

Thankfully, I've not had this problem, so can't advise you from my own experience. I have found a link to an article Approach to asymptomatic creatine kinase elevation, which may be of interest to you.

 

We always advise that if there are symptoms or test results which concern you, you should go back to your scleroderma expert/consultant for them to explain the details to you and suggest a suitable treatment, if any.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Quiltfairy,

 

I'm a little bit confused, probably because lab ranges can vary so much. I think the usual normal range for CK is about 20-200 (thereabouts).  Please bear in mind that I have absolutely no medical training at all, and verify all of this with a reliable medical source.

 

IF that's the normal range, my doctors have never expressed any concern over blood test results that were within the Normal range, even when they're smack dab next to the abnormal range -- like 31 on a scale of normal from 30 to 1000, which I would think is, aha, some sort of a low, even though it's actually not; or even when they change drastically within the normal range, like going from 31 to 999, which you'd think would indicate something! But, what it typically indicates is that test result is Normal. 

 

Very often, I'll have results that are out of Normal range but still don't signify any additional health problem.  And some of my tests are just always abnormal, simply due to established illness. 

 

Let's say your CK normal range is 20-200. In that case, an increase from 36 to 78 wouldn't be an issue, because it is still very much within a broad range of Normal.  Then again, labs can vary tremendously, so what matters is whether your test result is flagged as abnormal in the printout and/or whether your doctor thinks it's an issue.


First, you and your doctor need to seriously look at all the usual suspects for elevated CK and/or muscle weakness.  If, for example, you're on statins and your doctor takes you off of them, and your muscle weakness resolves, it might be a case of problem solved.

 

But if there are no easy answers, or no answers for the muscle weakness in particular, it would be suitable to have a full work-up.  I might suggest that the nearest scleroderma expert to you that I know of would be Dr. Jerry Molitor at University of Minnesota.  See our Scleroderma and Myopathy or Myositis resources. 

 

In short, I wouldn't be so much worried about the CK (if that's normal), but about the muscle weakness, which is not. If the CK doesn't nail the cause, more searching needs to be done.

:hug-group:

 


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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 Thanks to the both of you.

 

I did call my sclero doctor's nurse (my doctor at UNMC in Omaha) as he did tell me that it is in the high side of normal, but we do know I have peripheral neuropathy. He is a specialist; he not only treats scleroderma, but is the professor at the university of Nebraska. The first rheumatologist I had never had a scleroderma patients and he would not talk to me.

 

When I started with him I was asked if it was ok for interns to be in the room; I said, how else would they learn? I only had problems with two of them; one did not have a good bed side manner, the other was really good but the only thing I had about him was that he had sores on his hands. As I look back I could have asked him to put on gloves and when I saw him the next time I was in the office, I suggested gloves.

 

Anyway I could go on and on; doctors treat us for our illness, in return we teach them. That is how the world goes around and around.

 

So for now I will keep all of us in my heart.

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