Last reply 1 year ago
Any MSers with No physical Disability?

Hi
I was diagnosed just over a year ago (at 40) after optic neuritis. I have had no other relapses and my MRI has been status quo since last year. Can this “status quo” last? I am currently very active but know that this can change at any time.

Do many MSers not have any physical disabilities in the long run or should this be my expectation?

I am trying to set realistic expectations.

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stumbler
1 year ago

@spunky , MS is unpredictable and is capable of attacking our myelin sheaths at any location on our Central Nervous System (CNS). It is the location of this damage which could be disabling.

There are no hard and fast rules to this.

MRIs, whilst a useful tool, are not capable of showing the full detail of any progression of our MS.

Please don’t think I’m being pessimistic, but MS is unpredictable. You should live for the day, rather than worry about the future.


ahelps
1 year ago

I agree with @stumbler, I was disagnosed at 21 whilst at uni so wasn’t very active apart from walking. Looking back now (14 years later) where I have trouble walking and standing I wish I’d thrown myself at exercise more and been active whilst I had the chance. Maybe it would have helped things a little now.

I’ve never had optic neuritis and you may never have walking issues so don’t dwell on it. Live life and be positive.


tracyd
1 year ago

@spunky

The whole nature of MS is that you never know what’s behind the next door. It could be something small and relatively low impact to life and normality, or it could be the ‘mothership’ – the big one that does something unforgivable.

For each of us, how we chose to deal with that is a very personal experience. In this day and age with the modern treatments we have many options which can leave us feeling bewildered at the vast number available.

For the newly diagnosed, we tend to fall into a small number of ‘camps’ though when it all comes down to it.

– drug free healthy living for as long as possible
– slow down the progress for as long as possible
– fight back with the biggest baddest thing available

For me MS happened hard and fast, Optic Neuritis attacking my eyes and lesions which affected my legs and ability to walk. (I was firmly in camp 3 – I went to war) I’m now 18 months on and recieve no MS treatments at all, I have no symptoms other than I do get tired if I overdo things and most important I have no lesion / demyelination activity at all (the ongoing damage inside even if I had no relapse type symptoms scared the shit out of me)

So I guess the answer to your question is : No ….. I don’t have disability any more but I did for a while about 2 years ago and I hated it a lot.


scramblelina
1 year ago

I’ve just had my 10 year “anniversary” of ON which was my first symptom. Am now completely relapse and disability free (frantically knocking on wood as I speak). So yes it is possible


mmhhpp
1 year ago

Don’t worry and live for the day. My MS has not been nice to me but i used to go to an MS group were there were old ladies with one stick and really stable! But if i were you i would do things that you cannot longer do in my situation, go walking on hills, camping,
, outdoors, backpacking! I miss that so much….


potter
1 year ago

I was diagnosed 9 years ago, I can still walk but I am slower and can’t walk as long. I have trouble with cognitive problems which can be very frustrating. Potter


Anonymous
1 year ago

Hi. I’ve had MS for 30 years (officially diagnosed in 2001). There’s no reason to dwell on whether or not you’ll be disabled. I’ve let those thoughts engulf so much of my life and I regret it. I am still disability free and take stellar care of myself. In many ways MS has been a dark blessing. I am not without symptoms, but I try to keep them in the background.


tessa
1 year ago

Hi I had a severe attack of ” transverse myelitis ” when I was 16 in 1965. Made complete recovery and had no symptoms no relapses no treatment no neurologist nothing for 45 years. Completely ok after severe paralysis. Forgot about it..lived life to the full …married had children and good career.
Now I have started to have slow deterioration over the past 8 years, medical profession seem to say either SPMS or “premature ageing as a result of fallout of surviving compensatory axons” ( that from Barts amazing staff. ) I prefer the latter description . My first MRI showed little really apart from an area of past spinal cord atrophy which was said to be the danage at 16 and a couple T2 lesions in the brain which can just be a result of normal ageing,.at that consultation I wastold about something called post polio which seems rather similar. So while you are ok Carpe Diem !
Tessa


tessa
1 year ago

Hi I had a severe attack of ” transverse myelitis ” when I was 16 in 1965. Made complete recovery and had no symptoms no relapses no treatment no neurologist nothing for 45 years. Completely ok after severe paralysis. Forgot about it..lived life to the full …married had children and good career.
Now I have started to have slow deterioration over the past 8 years, medical profession seem to say either delayed SPMS or “premature ageing as a result of fallout of surviving compensatory axons” ( that from Barts amazing staff. ) I prefer the latter description . My first ever ( not available in 1965) MRI just recently showed little really apart from an area of past spinal cord atrophy which was said to be the damage at 16 and a couple T2 lesions in the brain which can just be a result of normal ageing,….. a friend who is a consultant radiologist also looked at the images and agreed they are completely non conclusive.. At my consultation I was told about something called post polio which seems rather similar. So while you are ok carpe diem ….as everyone else has said !
Tessa


sandwich
1 year ago

Me but I’m only 4 years in. I think no disability is pretty common in the early days.


emma77
1 year ago

Hi. I’ve had my first attack of ON in August. MRI Confirmed lesions but I’m done with the Neurologist now in his words. Case of waiting IF something else happens and when. Not great but no choice either! I feel where you are coming from!


spunky
1 year ago

@emma77 – you seem to have a similar situation as myself with having optic neuritis only to this point. My MS Neurologist saw 5 lesions on my MRIs within my neck, brain and back and he suggested starting with Aubagio or Copaxone. I guess I am not an officially confirmed case but he says that he is confident that I have MS.


emma77
1 year ago

I’ve been told I have to wait for a relapse to happen to be eligible for any treatment. However if I have any symptoms then I have to ring the MS nurses. All very confusing. I’m not diagnosed but he said to ring them rather than my gp.
Its good that you have been referred for treatment if that’s what you want to do also.
I wish you luck with everything.


pjones9700
1 year ago

I had ON just over 2 years ago but didn’t know what it was and was thousands of miles from any medical treatment
Then had a major transfer myelitis incident last January which meant I had no feeling in my legs for a few weeks, this and the fact ha I stared to lose the feeling in my hands and fingers eventually lead to a confirmed diagnosis after an MRI scan
I’ve now been in Tec for about 8 months and am pretty much symptom free apart from occasional loss of feeling in my finger tips and odd sensations in my right shin
I’m 46 now and reckon I’ve had ms for at least 5 years and possibly a lot longer as I “think” I may have had MS Hug around 10 years ago
Now taking Tec, Vit d (5000iu), B12 jabs and a probiotic, seems to be doing the job for me, but waiting to see my neuro and to see if I am going to have another MRI to see if there is any progression as it’s almost a year since I was diagnosed
Wishing you all the best of health and happiness for the new year
Phil

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