I’m currently RRMS but for nearly 2 years it has been suggested that I’m borderline SPMS. I’m totally confused wish they would tell me either way. My consultant retired last year and I was transferred to another consultant who has saw me once last May. This consultant wanted to try me on Aubagio and I had the dormant TB blood test etc last May found out it was clear last week. Had an MRI March 2017 as a result of hospital admission. New consultant wanted another MRI done to compare this was done in December got results today brain scan stable but a new small lesion in spinal cord which she will discuss with me in March at my next appointment. I used to have 3 monthly appointments with my previous consultant. MS nurse phoned last week re Aubagio and asked me how my symptoms are. I explained that my mobility is worse and I use only wheelchair outside house now and rolater and 2 sticks inside. There has been no improvement in my symptoms in over 2 years and everything is basically as it was. I was medically retired last September following 9 months sick leave and I’m now housebound unless someone takes me out. He decided to leave the Aubagio until after I see consultant as if I’m SPMS this drug does not help. Sorry for this being long first time here but I just wish I could get answer either way. My previous consultant told me he had nothing for me as previous treatments had to be stopped for a variety of reasons and I had a better quality of life without them.
Oh Franswan, that is similar to me. Diagnosed with rrms two and a half years ago, aged 55 in the space of a weekend! 3 episodes of right side paralysis took me via ambulance to a&e. Various tests and mri admission to a ward Saturday. Diagnosed Monday. 4 months later another episode, admission and iv steroids again. Discharged using a crutch. Then a rollator, then a wheelchair. After 18 months neuro confirmed my suspicion that it was ppms. Now another year on, the speed of my immobility and weakened hand has me thinking is it secondary ms? I see her again next month. I’ll want some more answers.
there is confusion over these labels - rrmms/spsms etc. What I can’t make out is, say someone’s legs are gradually getting weaker with no remission but the arms are o.k. wouldn’t a DMD help to keep the arms from ‘deteriorating?’ With spms bits of us are o.k - wouldn’t a dmd help to preserve those bits that are working?
I agree krakowian. It’s simply such an unknown quantity really. How can anyone be certain of anything?! Seems they can’t be really.
I was diagnosed in June 2016 and there has been a fast decline with a weakened right leg and hip with foot drop and a weakened right hand. Yesterday I collapsed on the floor when my legs suddenly crumpled under me and I was not mobile for several hours, to me that seems like a relapse? As I was diagnosed with progressive MS I am beginning to doubt the diagnosis. On Sunday I had mri’s with contrast, of brain neck and spine, so it will be interesting to see what they show.
The Barts Team are on the case with their “think hand” campaign. Multiple Sclerosis Research: We need a new way to measure upper limb function in MS: can you help us?