Hi my name is Christian. I am 25 years old and was diagnosed with rhabdomyaloscis at age 18. At the time doctors did'nt really know much about the disease, as I go on this will be something that you may be able to inform me with. Doctors at the time said it was mostly something that happened to atheletes, older people or homeless people that had laid on hard surfaces or in the same spot without moving for long periods of time. My ck elevated to 250000 and i was in icu for a month. I had had no prior problems or symptoms and was perfectly healthy. When it occured again, about a month or so later, i was refered to a specialist who said I had a genetic dificiancy that was somehow triggered to cause my rhabdo. Through the next five years it happened almost reguarly. I learned when to SLOW DOWN if feeling sick to avoid from it being so severe. It seems over the last couple of years it has slowed. I live life normally. Though I wouldnt dream of trying to run a mile or do extensive excersice for any long amount of time, especially in the heat. I have not been seeing a doctor, not in the last three years or so. I know this is very careless and quiet stupid on my behalf, as the cases of this disease seem to be multiplying over the years and new developments and possible treatments may become available without me having knowledge of them. I just dont have the transportation or insurance for it. I feel, even now, a discomfort in my upper legs. I notice I dont urinate as often as i think i should, though i dont "feel" any kidney problems. What is causing so many perfectly healthy people to be suddenly diangnosed with this rare, unusual, and DANGEROUS disease? I noticed just after my first case, there was an article in the paper with the starting pitcher for a high school softball team having rhabdo. Where has it been until now? Why suddenly is it seemingly spreading and doctors really know so little about it. We can nearly read articles such as these and look up the disease ourselves and find out as much as the doctors know. As a matter of fact, its exactly what my doctor did to learn how to treat me. Its so quiet though. People around us dont notice. We seem perfectly normal. People cant see what we have, and when we tell them, if they dont think its a complete crock or sob story, they dont realize the severity of it at all. It seems to me its spreading and no one even knows it exist, until it happens. If you can speak with me please reply.
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