I have had PCD since late 2006. Alert local doctoring from my internist & then a neurologist suspected, then diagnosed, it within a month after I frst sought medical help.
I have been treated at/by the Mayo Clinic since then and still work full time. The succesful treatment for me has been 1 gram IV of methylprednisolone at varying intervals. I started with daily & am now monthly. When they experimented with taking me off the steroids, all my symptoms came back with a vengance.
My symptoms include: feet are asleep 100% of the time, ataxia with voluntary muscles, myoclonic jerks, loss of appetite, taste changes, balance malfunction, fatigue, weakness, & lethargy.
I expect no effect on longevity, but the long-term steroid treatment could have repercussions.