Has anyone else been told they have relapsing progressive? I’ve been gradually getting worse for 2 years now and was quite happy with the PP type. Ok I get worse but don’t have any of those scary relapse I know lots of you get. Then, 4 weeks ago I start a relapse, which is sti L going on and horriblE I feel that I now have the worst of both worlds. Anyone in the same boat? How is it floor you?
Try posting on the ppms part of the forum, someone there may be able to answer you x
Hi dave, sorry you`re having a rubbish time.
I`m wondering what you mean by the title of your post;
Primary Progressive is progressive…so do you mean it is on a more agggressive slide?
Sorry if that sounds thick!
The neuro called that. I’ve been slowly progressive for 2 yrs, never had a relapse. Suddenly it all goes bonkers. If this is just progressive getting more aggressive then I can’t handle it if I don’t get better from here.
Hi again Dave.
my condition is like that. It has worsened quite a lot this year. I know it wont get better and just adapt the best I can.
I do ask and generally get help and support from a variety of sources. Do you? What are your symptoms now?
Hi Dave, I too have PPMS and was dx’d in 2011 but had probably had MS for 5 years by then. I had two strange ‘episodes’ during 2011, one of which made me feel very ill. These led the MS specialist to speculate that I may have PRMS but he wasn’t sure, nor was I. I haven’t had anything like it since or before. Who knows? Here’s hoping nothing rears its head like that again! Hope you start to feel better soon. Teresa xx
Hi Dave! I am very sorry ! Hope you get better soon XX
I was diagnosed in 2004 with PPMS. Around 2007 I started to have a few ‘episodes’ but was still progressing and my neuro at the time told me he was going to ‘tweak’ my diagnosis to Progressive Relapsing MS!! I lived with that diagnosis for the next three years, when suddenly my notes started stating that I was Secondary Progressive!!! And that is what I am to this day. I do think that SPMS is the most likely diagnosis, as looking back, I can recall many occasions (even back to my childhood) when I had lots of unexplained symptoms and illnesses that I now think were probably MS relapses.
But, I wouldn’t worry too much about the label, your MS is your MS and doesn’t really matter how you refer to it, it is going to take the course it is going to take.
Best wishes to you