If you feel that another CK level would help settle your mind about possible lab error or whatever, then ask for it. But remember that CK can rise with any muscle problem/damage, so it's just the beginning of finding the exact issue. CK can be roughly 10-100 times the normal value (<200), so your neurologist cannot rule out DMD based on a value in the 5000's.The DNA results should give you the final answer, though we all know how difficult it is to wait for those...it's agonizing. And occasionally there needs to be further investigation. And we don't all fall into a nice neat category either.
In about 1/3 of DMD cases there is no family history because it's a spontaneous new mutation, which can either happen in the child or the mother (who is a carrier). That is my case, I am the first mutation in the family and am thus a carrier. My oldest, who is 13, has DMD and my youngest, 10 does not. The youngest boy was already born when the oldest was diagnosed, so he also had a 50/50 chance of having DMD, but does not.
One step at a time, Diana. Don't get ahead of yourselves by doing research on the internet right now, that will only sap your energy. You probably feel very alone and scared, but we have all been there and can walk the path with you.
We're all hoping the DNA comes back negative, but a CPK in the 5000 range raises a lot of questions. I think normal for a boy is 100 or so. You certainly could have another CPK, but you won't really have an answer until the DNA comes back.
I believe the CPK level will be reported again at part of the DNA testing. Our son was diagnosed at the age of 5. His CPK if I recall was around 4,500. I was told, and fought it of course because I was trying to rationalize it, that anything over the norm is still cause for concern whether it was 4,000 or 40,000. There also was no family history on our end. He also has a stop codon mutation at exon 58 - I have yet to find anyone with that. I would agree with the others, if you want another test, ask for it, but you will get it again with the DNA testing. I'm sorry you are going through this. Unforatunately, most of us on this website has as well. Take one day at a time.
We are still waiting on genetic testing results too. My son is about to turn 5 and last week had an MRI and blood draw. His CK came back 7,500. I wondered the same as you, but I have since seen stories of some kids who were diagnosed 5,000-8,000 unfortunately. I guess everyone is different. We have no history either. My son has been late on every single milestone and still isn't running/jumping. Sadly, the more research I do, the more it seems like DMD is the most likely cause of all his symptoms. This disease is so blindsiding, and 4-6 weeks is an agonizingly long time, I am right there with you.
I just wanted to say that I'm glad the waiting part of this is over for you (we are still there). I know you still don't know exactly what to expect, but answers of any sort are good. We had a CK of 1990 and then 2100 which is right on the borderline of 10 times normal.. I understand. Shouldn't be too long for us now. Sending you hugs and xxx in this difficult time!