Diagnosed with PPMS in 2006. Since then it’s been a gradual deterioration but this year I’ve had 2 episodes 6 weeks apart which seriously weakened me. PPMS isn’t supposed to have flare ups. The NHS can’t find any evidence of infection and just put it down to the MS. Anybody had similar, and if so how did you cope?
Hi, I’m a carer for my husband who has PPMS he was diagnosed in 2017 although been suffering a lot longer than that. He was quite good after first being diagnosed, more issues with cognition than mobility but since April this year, he has gone downhill, since having both covid jabs to be honest. His GP, MS nurse seems to think it was a reaction, but since then he’s not very steady on his feet, he can’t walk very far and uses a scooter/ wheelchair to go out. He now has double vision and his cognitive issues are much worse. He has to be prompted to do things, take meds, food etc!. He thankfully doesn’t have any pain and never has and he isn’t on any medication, he was refused Ocrevus recently. It just feels like he’s been left to it. Sorry this is a bit long winded but it’s difficult to explain to others what it’s like for him unless you see it first hand. It really is a (removed by moderator)condition! He does have a carer for an hour a day, free at the moment for 6 weeks, he came to my work last week with his carer in his PJ’s (shorts & tshirt) and winter coat on top. I was so angry that he had come out like that, the carer said he was in bed when he came there. Colin just said there was nothing to get up early for. This is really not much of a life for a 54 year old. I just hope with direct payments things will be better. Did you have your covid jabs recently? As a lot of people have suffered worsening symptoms, just hope it’s this rather than progression.