has anyone ever had their blood ck le... - Charcot-Marie-Too...
has anyone ever had their blood ck levels checked?mine come back raised just wondering if its related to hnpp ? thanks
By CK I assume you mean Creatine Kinase. This is an enzyme that can be a marker for various muscle degrading diseases. I have type 1a CMT and higher than normal CK levels.
From wikipedia:
"Clinically, creatine kinase is assayed in blood tests as a marker of myocardial infarction (heart attack), rhabdomyolysis (severe muscle breakdown), muscular dystrophy, the autoimmune myositides and in acute renal failure".
In CMT and, I assume, HNPP sufferers it's most probably going to be due to severe muscle breakdown as both diseases can lead to muscle atrophy.
This is a very good q as I never heard of this b4 but my I have had blood tests in the past and they always seem to come back with my Gp saying I have abnormal results and never new what it means and not really been told. But don't know if this maybe what they are seeing yet also think maybe the gp's don't understand it. Mm great q would love to know a bit more on this subject. Horshamalc thanks for this bit of knowledge I can now bring this up with my Gp. Would like to know what is normal and what is not I also have Cmt 1a
hi ,horshammalc and thanks ,mine was 630 ,do you mind me asking what yours was.
hi my gp told me to stop my statins for now as they cause muscle breakdown,she didnt think hnpp was the problem as its a nerve disorder,but surely the nerves not working correctly affect the muscle ,causing atrophy long term hence slightly higher ck levels,obviously varying on the individual how much they are affected.i know people with certain muscular dystrophies are in the tens of thousands,and nerve disorders slightly high.it may be something else but i thought for my gp to just plainly dismiss it...its black and white with them...
Hi Markglaspole, I'm sorry but I don't have the figure to hand, it was about 8 years ago that I had the test done. I'll ask my GP next time I see him. I was fortunate that he is a part-time neurologist and recognised the symptoms very quickly once I brought to his attention the hand / foot weakness etc. The CK test was the clincher, followed by a DNA test to find which CMT type I am. The GP has been very supportive but, alas, there's little the medical profession can do for us, and it's down to the individual to keep fit and active as best they can - use it or loose it! The GP also tentatively broached the subject of statins, as they seem to be the flavour of the month for people of my age (59). Knowing my adversity to taking any form of medication, particularly as a 'precaution' (I don't have high cholesterol), he wasn't surprised by my response.
hi horshammalc, a few days prior to my test,i did some very strenuous lifting ,which i dont think helped ,we take so much longer to recover.your lucky to have a supportive gp ive been passed between a few and i think they all have different ideas on how to deal with me lol,i heard one doctor say if he had his way they would have statins in the water ,now theres a thought ,take care
Not what you're looking for?
Moderation team
