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General Info, perhaps useful

BillyReyn Message
11 Jun 2009, 01:40 PM

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.
Teodor Message
13 Jul 2009, 09:38 PM

Hallo, I'm pharmacist from Sofia, Bulgaria. I'm interested in your case and the therapy of your desease. I'd like to know the full scheme of the therapy with prednisolon that your doctor applied to you. The reason I want that information is because I have one pationt with that diagnosis and doctors here do not want to treat her. It's very pitty but I want to do what I can for her. So if you can, give me also some coordinates (e_mail) of you doctor so he can tell me all about the treatmen (if he agrees).