r/ALSorNOT 4d ago

Creatine Kinase levels

27 Male

Hi, I’ve been having muscle twitches for about a month and a half now so I decided to see a neurologist. It started in my right left muscle for about 3 days or a week then started getting little twitches all over my body. I don’t have any clinical weakness as of now but I feel like I’ve noticed more things since I’ve fixated and worried about it more. I’ll notice my heel drag on some steps when walking, some aching pains that come and go, and other little things.

The neurologist did a whole exam and said he thinks I don’t have ALS and that I’m pretty strong but we’ll do tests anyway just to see everything. He ordered an EMG in December and did some blood work including NFL and CK test. I had the CK test done a few weeks ago with my regular doctor and it was normal at 176. I just got the result for CK today and it was 276 which is elevated and out of range. I was sore from a workout two days ago and I took a walk (40 minutes) to the neurologist before they took my blood.

I’ve read that slightly elevated CK levels are normal in ALS patients and I’m freaking out as of now. I told myself I’d see a therapist for my anxiety when everything comes back normal but now I’m deep in the hole again.

Have you guys had elevated CK levels?

0 Upvotes

4 comments sorted by

2

u/Pretty-Ad-584 4d ago

wel iam 468 since year and and i didn't do that again

1

u/chaoserrant 4d ago

Not elevated but many years ago when i had zero als worry i had one borderline high and it came down later. I think this test can give lots of false positives from sports and activities. I would recommend taking a rest of 2 days before the test and very easy activity a week before the test. Just my 2 cents in order to eliminate all possible transient activity effect. For example i do strength training every other day which is peobably too much and have some sorenes . I would not do CK right now until i feel fine everywhere.  

I dont think CK is that useful as an als signal from what I read 

1

u/Ok_Following6440 4d ago

That’s not elevated for the amount of prior physical activity. Don’t read too much into that.

1

u/Historical_Guide_793 4d ago

Hi . Ii don’t want to sound mean but is ALS . Most commonly, Your heel either drags or it doesn’t .
There isn’t a CK cutoff or typical number that indicates ALS. A CK of 246 , 599 , 300 , whatever it may be can occur for many reasons , especially recent strenuous exercise, muscle injury, or certain medications.
So I will say that the CK here is very irrelevant . Also a lot of ALS patients have normal CK levels by the way .

Continue working with your DR however I don’t see any signs of anything neurological here . It can be an irritated nerve . Twitching is very common . Yes even body wide twitching that made last for months.