@costella 

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costella

Mobility

Hey, more questions from me again. How long did it take for you to go from walking to using mobility aids like canes to using mobility aids like wheelchairs? It feels like my mobility is deteriorating relatively fast and I'm honestly rather worried I'm just trying to get an idea of what to expect.
@mellowmedusa

Individual experience is unlikely to help you as outcomes are so widely variable. It may be more helpful to look at population statistics although given that DMDs have increased in efficacy so greatly in the past 10-15 years, these are likely more Requiring a walking aid is a major milestone in MS - corresponding to an EDSS of 6 - so there’s more data on it. If you are going to require walking assistance, the average is 15 years post diagnosis (and this is heavily influenced by age - diagnosis before 40, 15-25 yrs, after 40, possibly 10-15). I emphasis this was pre DMDs. Even before DMDs, we know that just under half of MS patients were eventually given the diagnosis of SPMS or required a wheelchair. This is old data and difficult to interpret but still makes the point that mobility progression is variable. I don’t think you have a diagnosis of MS yet, correct? It would be very very unlikely that at your age you would be showing signs of advanced MS. I say very very unlikely and not impossible as there is a tiny subset of pts who have rapidly progressive MS and these skew the averages. However if this does turn out to be you and it’s again vv unlikely, then you would be prioritised for the most efficacious treatments and likely HSCT.

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@Helen_Weeks

I don’t think you should worry about that , it is different for everyone and you may never need a wheelchair xx it was my first concern when I was diagnosed 16 years ago and now I use a rollator since last couple of years but don’t ‘expect’ or assume… live your life to the full xxx