I was diagnosed 5 yrs ago with cpt2..ive been hopitalized several times yearly with cpk levels as high as 125,000 along with myoglobiniria...my last episode last Aug resulted in a 1 month hospitalization with kidney dialysis in CCU on life support. My current problem is i live in a very small community with no access to good medical care without a 2 hour drive...i am in need of a surgery on my cervical spine...i have been sent to specialist 2 hours away who refuses to take me as a patient because of my cpt2 so he recently sent me to Barnes in St Louis where the highest specialist reside, I was sent home being told i needed the surgery but i was very high risk for it because of my cpt2 and they really didnt want to attempt putting me through such serious possibilities of problems during surgery....ive also had a stent put in my main artery due to a 90% blockage in Dec of 2006. I was told i need several specialist in surgery in case of complications...i have also read i am at risk for MH...has anyone heard of this in patients with CPT2? ive had surgeries in the past without complications before i was even diagnoses with CPT2.
