Neither did I, till I learned apparently I have it. http://www.mdausa.org/publications/Quest/q66metabolic.html And here everyone thought I was just lazy. The doctors suspected I might have it when I wound up in the hospital a couple months ago due to acute renal failure. Probably caused by the release of massive amounts of creatine kinase into my system. Due to rhabdomyolysis, or muslce breakdown, in english. Fun, fun, eh?
No, but I have heard of creatine. I'm not a doctor, but it's obvious that if you're deficient - theres plenty at the health food store. Buy some and you'll feel amazing. As a young, overweight child, I think I had the opposite. Always tons of explosive energy. I remember going out onto the field with this feeling in my legs and back that's despite everything, they could carry godzilla across in a few second. In class it made me wrestless (especially after a good soccer game in the blizzard.) Good for sprinting (fun kicking everyones ass at that when overweight!) wrestling, or anything else which involved immediate energy. It was probably a result of other physical inactivity and high uptake of proteins..alongside many adolescent hormones. Seriously -- how else do you outsprint everyone with such a fat belly? Now that I'm average weight and excercise a lot more, my creatine has levelled. I simply cannot sympathize for you. Never experienced anything like it myself. Again, if you want to feel the way I did, buy some creatine. It's no different than buying vitamins and a lot safer.
The problem I have is too much Creatine Kinase, or CK, being produced because of a malfunctioning enzyme in the way I process energy. I'm not sure what the difference is between just creatine and CK but if getting energy was as easy as taking a creatine pill I think the doctor's would have mentioned it. As is I have to be very careful about how much physical exertion I put myself through, and drink lots of fluids to flush the CK out of my system. I'm not sure exactly what kind of Myopathy I have, as I need more testing done. But the doctor said short of gene therapy, which they haven't invented yet for this disorder, I'll have it the rest of my life.
I would recommend steady, non-aerobic exersize. Something like yoga or tai chi. Something non-exciting which can burn lots of energy, while not getting you all "geared up" like running or basketball. Ask your doctor what he/she thinks, but that was my first reaction to the problem.
That's great advise on how someone like me can keep in shape. But it still doesn't address the fact I'll never in my life be able to run an eight minute mile. Or run for more than thirty seconds for that matter.
True, but you may be able to learn to control the levels of kinase in your body through activity and diet. Worked for me. took about 12 years, several suicide attempts, and lots of failures (social and academically), but now I'm sort of functional. (Reynod's, Acolasia, ADHD, Mild Dislexia, Hypoglycemia, unhealthy low levels of cholesterol, iron deficiency, Asthma). I'd account about 75% of my semi-normalcy to self-study/diet/controlled metabolism modifying exersize. My Seratonin uptake has changed dramatically enough that before I started working on this myself, my doctor had me on so much medication to balance out my brain chemichals that they had to check my heart once a week to make sure I wasn't going to die. I was on medication for 4 years before I started doing Yoga/Martial Arts/watching my diet, daily habits, sleep cycles, etc. After 6 years of work, I was completely off the medication. After 12 years, my hypoglycemia is pretty much under control, the Reynods is completely under control, and the Asthma is gone. The Acolasia is still a problem, but I have learned to control my throat muscles by conscious thought (ie like taking control over your heart rate). so I can survive. All of these things I was told were impossible by doctors when I was younger, and I have proved them wrong. What ever your doctor tells you, listen to him. Then go to a second doctor for independant verification of the study results. Then go talk to someone who knows about alternative therapies. edit: I just saw the link in your post, and went to read the article. notice how it says at the top that the symptoms can be controlled with diet and exersize? No, you may never be able to run a mile. So? While yes, not being able to do something sucks, it's not the end of the world. You can still walk that mile. Learn to enjoy the scenery as you take your time. Your life and your body is what it is. There is no usefullness to heming and hawing over it. Fix what you can, and steadily work on everything else, just in case you can improve on it. Don't let anyone tell you what you can and can't do, find out for your self. If you can't run a mile in under 8 minutes, then you can't run a mile in under 8 minutes. I can't fast for more than 6 hours, though my spiritual beliefs suggest that I fast for a day or two everyonce in a while. I would like to try that, but if I do, I will die. That's how my body is. That's just how life works. When I was younger, I couldn't go 3 hours without eating; I've been working on it, and it's improved slightly as I've gotten older. I doubt I'll ever be able to go on a vision quest or fast in meditation for a week, though, no matter how much effort I put into it.
given this: "Last June, Stout squatted down for a second and triggered an attack of rhabdomyolysis that cost him 10 percent of the muscle mass in both his thighs. He cites a list of other activities that could trigger problems in people with phosphorylase deficiency, including squatting, standing on tiptoes, and lifting, pushing or pulling heavy objects. Each of these activities involves "isometric" exercise, or strength exercise." I would recommend against any form of intense yoga, or in fact any yoga at all. I would still recommend limited tai chi or Chi Gung, both which can be easily modified to very low-impact, low stress versions, perfect for many MD disorders. How serious does the doctor say your case is? have you ever expirience a "muscle cramp" like what this article mentions?
Creatine kinase is an enzyme . It breaks down the prefix..Creatine - a dinky amino acid in this case. You're producing too much CK for whatever reason. And believe me -- many people have the same problem. If not creatine than something else. Consider yourself lucky that it isn't so detrimental to your health. The reason your doctor will not recommend artificial creatine intake is because it doesn't have the studies to back it up. Plus, it's available mostly to the athletics community as opposed to medicine since doctors prefer stopping the problem at the root. (patching it often leads to other leaks.) They put creatine in sports drinks. OR it comes in pill or powder format. Wrestlers and football players love it. Even baseball (know what Maguire was drinking?) I'm not sure if your body will produce more CK in response to artificially increased Creatine levels. If it doesn't, then it's perfectly safe. So like I said, the best thing is to ask your doctor and ignore my word. As a doctor, he wouldn't be encouraged to recommend it (in the way they wont recommend herbs,) but he will give you an honest response. Good luck :m:
I wasn't trying to bash the benefits of a good diet and everything, in fact I definately plan on looking into many of the suggestions here. Just pointing out that the original topic of the thread was the actual disorder, and direct treatment. My case doesn't seem to be nearly as bad as the guy in the article, fourtunately, and I can still live a moderately normal life. I didn't mean to sound whiney, was just wondering if anyone had any previous knowledge/input.
the MD types I'm familiar with are myelin-sheath deficiencies - more of the neurological problem end then the muscle problem area. I did some reading, to get an idea of what your condition is. Do you specifically know which metabolic area you are deficient in? http://www.mdausa.org/publications/Quest/q66metabolic2.html based on the page you linked, knowing where the metabolic breakdown occurs will help lay down a path for getting around the problem. I found this to be a usefull resource: http://www.emedicine.com/neuro/topic672.htm (note: for anyone who doesn't know Adenosine TriPhosphate, or ATP, is the chemical that the cells actually use for energy transfer and storage - Glucose is how it travels in the blood, once in the body cells, it's converted to ATP)
Unfourtunately I don't know the specific problem. I'm going in for more tests next month. And a little after those I go back for a muscle biopsy. Fun, fun.
Well, Xerxes is right, Creatine Kinase is the enzyme, and creatine is the substrate. However, IIRC, kinase proteins (and there are hundreds of them) add phophate groups to the substrate, as opposed to breaking them down. After the creatine has been phosphorylated, it can be processed by another enzyme.
