How long did it take from experiencing first symptoms to needing a walking aid like a cane to wheelchair?
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The article below isn’t the answer to the question you asked but plots average timescale from one phase of progression to the next, using the EDSS scoring system. Warning: as the title suggests, you may also be able to extrapolate to death, so don’t click if you don’t want to discover it.
Are you aware of the EDSS scoring system?
Hi Sarah , I don’t have Primary Progressive but I’m happy to share my experience with Relapsing Remitting if you want. Time to needing some aid wasnt simple I.e it depends on how far I want to walk
Hi @sarah20
Welcome. For me, disability was ever so gradual and took a number of years to impact, from my teenage to late thirties. Everyone’s experience is different.
I started using two walking aids/walker (I think 6.5 on the EDSS disability scale) after a hemorrhagic stroke not directly linked to multiple sclerosis, a few years ago. I’ve had MS for 20+ years now, so more than half my life, but I’ve always tried to adapt and not let it impact me too much.
Best regards,
JP
I think it was about 12 years from diagnosis to needing to use a walking stick. Probably five years from that point to needing to use a wheelchair full-time.
Hi Sarah20
You will know that everyone’s experience with MS is different, it’s not a one size fits all I guess.
For me, I had a fall in Jan 2020 and lost use in my right leg, following tests etc my diagnosis of MS came in April 22 and I was given a FES machine for my leg (functional electronic stimulator). Diagnosed with PPMS in September 2022…. I needed my walking stick in September 2023 , a crutch in February 2024 and my MS nurse and the Fes scientists said I needed a wheelchair in May 2024.
I’ve purchased a carbon fibre wheelchair in August 2024. So ……long story short ha ha… c4 years from diagnosis to wheelchair
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For me it depends on which symptom would considered my first; if it is the weird hand/arm sensation in 2013 that began my journey to diagnosis, then its 3 - 4 years; if it is the optic neuritis my MS Specialist says was the first symptom then its 33 years.
As others have said - we’re all different and so is the timeline for each of us.