PPMS (Relapsing)

Hi guys, Latest report from Consultant says I suffer from relapsing PPMS I am somewhat confused due to progression with this type expected over years/decades, yet my body says yes to this, I have suffered 2 fairly scary events of sudden decline in my mobility from Jan - April this year with no evidence of UTI’s or virus as a trigger, I feel I’ve come through a crisis now but with more noticeable deterioration in my mobility.

Can anyone else relate to the same sort of pattern, or what are your thoughts on the subject.

Pauline xx

Yes Pauline I can relate, and I’ve just spoken to my Neuro about it and he explained. Basically, damaged nerves can become a bit more irritated or signals don’t get through as well for a time, and then the “inflammation” or irritation may find areas or ways to communicate again. It all depends on which nerves in which circuits are affected. But also it could be that the signals sent directly from the brain, could be “overworked” and suffer from fatigue. He said it’s like optic neuritis which can really distort or stop vision for a while as the optic nerve gets affected and the signals between the brain and optic nerve don’t work, and then suddenly it resolves again.

I don’t know how clear that is, I understood it so well when he explained and ON was the only example I could think of. But we’re normal!!! As far as any ms’er can be normal. Sorry, I’m tired and can’t think of any other way to explain or any long or clever words. If you want I can try to explain better when I’m more awake.

Goodnight and take care.

Cath xx

Hi Pauline, I have heard of it before… although I thought it was now called Progressive Relapsing MS… well whatever… it’s only fairly recently that it’s been identified. Keep in mind that like all things MS, because it has started like that doesn’t mean it will continue like that. It might just settle down with no more relapses… let’s hope so. Cath’s info is great. My mobility did go through a sudden decline a few years ago… and then stayed the same for a few years… and recently declined a bit more. So there’s really no rhyme or reason to it. Take care, Pat xx

Thanks ladies, I just hope the progression slows down seemed to have taken a nose dive since Jan, like you both say it is so unpredictable. I’m praying at the moment that I can at least keep enough mobility to not have to rely too much on others.