Hello everyone, got room for one more?
Posted: Wed Aug 02, 2006 10:00 am
Hello everyone, got room for one more?
I’ve visited this forum many times over the years but this is my first post. I think there is a great bunch of people here and I wanted to say thanks for all the posts. It really does help. I may have some experiences that could help others and I’ll watch for opportunities.
My name is Mick (yes, like the mouse only shorter).
I’m in one of those statistical minorities; 50ish male dx’d with ppms in 2001 (after limping for a year). I’ve been thru a number of neuros (first one couldn’t read a spinal tap lab report and missed the fact that there were 3 “O” bands). I finally went to the Cleveland Clinic with all my info and was diagnosed with PPMS in about 30 seconds. Hmm?
Anyway, I tried Novantrone.My GP stopped it after 3 doses and a 20% decrease in heart function. I don’t know what would have happened if I’d kept going? So now I don’t take anything (except a very careful diet) but I have a very good and supportive Neuro and GP. I’m now thinking about trying tysabri, any thoughts ?
I know this ailment is anything but predictable but I’m wondering if I dare to consider that it may be leveling out? Nothing seems to be changing (mri etc.), right side still works good. Has anyone had ppms and stopped getting worse after 5 or 6 years?
Reading about possibilities and statistics is not that helpful. Hearing from real people would be.
Thanks for being there, hope I can contribute.
Mick
I’ve visited this forum many times over the years but this is my first post. I think there is a great bunch of people here and I wanted to say thanks for all the posts. It really does help. I may have some experiences that could help others and I’ll watch for opportunities.
My name is Mick (yes, like the mouse only shorter).
I’m in one of those statistical minorities; 50ish male dx’d with ppms in 2001 (after limping for a year). I’ve been thru a number of neuros (first one couldn’t read a spinal tap lab report and missed the fact that there were 3 “O” bands). I finally went to the Cleveland Clinic with all my info and was diagnosed with PPMS in about 30 seconds. Hmm?
Anyway, I tried Novantrone.My GP stopped it after 3 doses and a 20% decrease in heart function. I don’t know what would have happened if I’d kept going? So now I don’t take anything (except a very careful diet) but I have a very good and supportive Neuro and GP. I’m now thinking about trying tysabri, any thoughts ?
I know this ailment is anything but predictable but I’m wondering if I dare to consider that it may be leveling out? Nothing seems to be changing (mri etc.), right side still works good. Has anyone had ppms and stopped getting worse after 5 or 6 years?
Reading about possibilities and statistics is not that helpful. Hearing from real people would be.
Thanks for being there, hope I can contribute.
Mick