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Borderline Secondary Progressive

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.

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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?