Freaked out by doctor - creatinine kinase elevated

[Picalilly]

Hi everyone,

I am respectful that this is an als website and should not be abused in any way as those suffering have limited resources so I will keep this as brief as I can and hope I get some guidance and then go away and follow that guidance. I am 28 years old and went to be gp due to feeling wobbly and having an intention tremor (when I lift my feet they judder, bend over I judder etc etc). She referred me to a neurologist who did an exam and found nothing to worry about, no weakness. He ordered a load of blood tests. I've had them back and one for Creatinine Kinase came back extremely elevated - 1265. My gp seemed very concerned and referred me back urgently to the neurologist. I googled this as I'd never heard about it and als came up and now I am extremely anxious. I don't feel like I have clinical weakness, I can walk everywhere and do my usual tasks. Does anyone know whether there is a link between CK and als at all and surely if I had such an elevated level due to als I would not be able to use my muscles? The neurologist has just said to repeat the test in 2 weeks as I'm going through ivf and have been injecting, but only into fat. I feel sick at the thought of waiting 2 weeks and am very worried. Any advice would be very much appreciated and if I am worrying over nothing I will leave immediately. Thank you in advance.

 

[infiniti23]

I had a bout of high CK several months ago. Mine was 3700 and caused by a virus, all my muscles felt like they were going to rip from the bones. My last CK was 97.

I have had two neurologists tell me that CK can be elevated mildly in ALS. However, values >1000 contraindicate ALS and MND.

 

[Dusty7]

"Does anyone know whether there is a link between CK and als..."

Elevated CK points away from ALS and towards possible muscle damage or disease (myopathy). The reason to repeat the test is to see if CK levels fall in the subsequent test, indicating that the muscle damage may have been temporary and is now improving. You need to follow up as directed by your doctor to determine the reason for the elevated results, but ALS is not indicated.

 

[Picalilly]

Hi,

Thank you very much for your help and advice. I will get the test repeated.

Thanks again and best wishes.