im hoping for some advice from anyone whose had the same experience.ive had ppms for 24 years it affects my legs and i use a wheelchair outside but have always managed getting round my flat holding furniture etc 7 weeks ago got realy bad spasms in my leg/foot had a few falls and turns out i had a uti a week in hospital on steroids then 3 weeks in a rehab place all the time not moving much ive now come back home and living in my front room due to steps to my bedroom and bathroom im starting to walk a bit but not near my normal level of mobility,im confused inthat i didnt think ppms had relapses.can anyone give me any advice or any kindof idea howlong before ican regain thebit of mobility i had or is this how il be from now on .any help would be very gratefully received
Hi Andy, ms is full of surprises, You sound similar to me , I have some mobility in own home but none outside . I have a salsa mini 2 wheelchair and have Frazer my assistance dog . I’m not diagnosed with ms I didn’t for all of the criteria, I’m seeing a neurologist again soon . I hope you feel better soon , it’s scary losing more of your mobility. I think other people will be able to give you advice on here. Michelle and Frazer xx
Hi Andrew, As you had a week in hospital and 3 weeks in rehab, your muscles will be weakened. You need physiotherapy or an organised set of exercises that are tailored to your level of disability. Can your MS Nurse or GP point you in the right direction? Regards, Anthony
Anthony and Moirah thanks for the replies ive got exercises to do and a physio vists me i suppose im just to impatient and been suprised by the setback as i didnt think us with ppms had relapses but im thinking its a result of virtual no movement for a month,just hope i get the little bit of mobility i had back
I don’t think the types always fit, I was diagnosed about 4.5yrs ago. I had symptoms for at least 5yrs before Dx but hindsight suggests I may have had a very weird time about 22yrs and some odd stuff has happened after. I was diagnosed with PPMS but then managed to get differing opinion saying RRMS and took a DMD for 12 months - my personal opinion is PRMS (progressive relapsing) but PPMS label still stands…
Since my very first steroid experience, I’ve asked for them again 3 times as they always help with some things.
I don’t think there’s 100% clarity of MS types and it seems they change too. I was involved in a trial for rapidly evolving MS - again another term!
thanks sonia im starting to learn to expect anything still not sure ive had a relapse or a result of being on my bum for over a month,or long lasting effects of the uti,i suspect its a mix of the last two.il just keep doing my exercises and bits of walking/standing see how i get on.im determined and do like a challenge
im now sleeping back in my bed and using my bathroom,hated the commode,my mobility has improved but im not back to the mobility I had 2 months ago before the uti.i saw my neurologist last week and he suprised me by saying id had a relapse due to the uti as I have ppms I thought we didn’t get relapses but he was convinced that was why my symptoms had got worse.he said could take between 4 and 9 months to recover that’s if I ever do,im seeing him again in 4 months wchich will be 6 months since the uti,ive read that after a relapse 6 months is a good yardstick and that however your symptoms are then that’s it with no further recovery expected.does anyone with ppms have experience of relapses or heard about the six month thing.thanks for any input and happy new year everyone
