Guest guest Posted May 3, 2000 Report Share Posted May 3, 2000 Just thought I'd update quickly: ViroPharma called today and I was officially APPROVED for the use of Pleconaril for presumed chronic enteroviral meningoencephalitis. My doctor has to send a complete medical history and fill out some 'investigator' paperwork, because it has to be done a bit like a study, and she doesn't know how to do it (she's never done anything like this before, as a primary care doc for generally healthy med students!), but the ID doc is helping her. As soon as that gets in, they will ship the med. It's 10 days, three times a day, orally. No side effects have ever been reported. If it works, I will be the person to write the case report for the journals -- my internist, ID doc, and neuro will be authors on the paper, as well, but I did all the investigative work, and they've promised I can write the paper (being published in journals is a big deal when applying to residencies, etc... it's a large chunk of what an academic reputation is based upon). :-) It may take months to see the results (the case report I read said it took 5-7 months for one other PID patient to experience the benefits), but I feel like even if it doesn't work, I've now done everything I possibly can to try to fix my neuro issues (within the realm of current scientific knowledge). After 6 cases of meningitis and encephalitis in less than 2 years, and after peripheral neuropathy (numbness and burning pain in my hands and feet), seizures, headaches, joint pain, and messed up reflexes, I'm just hoping to see any improvement, no matter how small. HOPE.... that's the key to it all. I'm VERY happy... just thought I'd share the good news! Take care, Quote Link to comment Share on other sites More sharing options...
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