Progresive forms of MS Community Group
I want this to be a forum to discuss openly and honestly about the challenges progresive MS poses. This is NOT a place to down play your severity of synptoms or just MS in general. No more advice that isn't appopriate and no more fear. Monsters live in the dark so lets all shed some light.
Still trying to find out all I can about PPMS and why the doctors are taking so long to confirm it, so this short explanation makes more sense to me:
http://www.mymsaa.org/publications/ppms/
Its interesting that the diagnostic tools differ somewhat from that used to confirm RRMS which explains why there can be so much confusion and lengthy delays in making diagnosis. Its interesting for me that they say there may be little or no inflammation found in the body but the demyelination may have bee caused by a virus in the past. This would fit with my situation perfectly and I think its the reason the first specialist I saw thought it looked very like PPMS.
There are so many points in this article which describe my situation perfectly so pleased to come across it.
I want to print this article out and take it to next neurology appointment but sometimes doctors can be very dismissive when we take our own articles and tend to minimise our contributions. I just want to find a good, competent and caring neurologist who has some experiences with PPMS and treats me like an intelligent adult - thats all, (too much to ask?)
http://www.mymsaa.org/publications/ppms/
Its interesting that the diagnostic tools differ somewhat from that used to confirm RRMS which explains why there can be so much confusion and lengthy delays in making diagnosis. Its interesting for me that they say there may be little or no inflammation found in the body but the demyelination may have bee caused by a virus in the past. This would fit with my situation perfectly and I think its the reason the first specialist I saw thought it looked very like PPMS.
There are so many points in this article which describe my situation perfectly so pleased to come across it.
I want to print this article out and take it to next neurology appointment but sometimes doctors can be very dismissive when we take our own articles and tend to minimise our contributions. I just want to find a good, competent and caring neurologist who has some experiences with PPMS and treats me like an intelligent adult - thats all, (too much to ask?)
Apparently 95% of the human population gets exposed to it, but 100% of MSers have. My first neurologist seemed to think that wasn't important.
Hopefully you will get a good neuro. I ADORE mine, but the first was a real jerk.