When I went to see my neuro he said most people with ms do ok for about 20 years & most many more. What does he mean by after 20 years?!? I didnt want to ask him! Well I don’t think he would have given me the time anyway!
Diagnosed 21 years ago…had condition for nearly 40 years. OK I’m no longer climbing steep hills or walking 10 miles a day [I really did] but thanks to Rebif followed by Tysabri I am still walking and no one looking at me would think there was anything wrong with me.
I’ve had it for 30 years and the last 4 years
things have really started happening, so I guess we all differ as does ms.
Eleven years in and I’m knackered with a capital F
I guess he is referring to the possible onset of secondary progressive.
It doesn’t happen to everyone and is of course different for everyone.
Mine stated after about 15 years and has meant a steady worsening of symptoms. Some people experience a plateau during SP when nothing much more happens. I’m waiting for my plateau.
I’m having my 25 year ms “anniversary” this year and I’m still RR… however mine’s perked up in the last couple of years so who knows - we’re all different xx
18+ years for me and the last 3 have been my worst ever Sue
Had MS for over 30 years, known for 15 years, last 3 have been slowly getting worse, walking effected.
From benign to SP now.
diagnosed in '96 but had it for at least 10 years before, walking +movement not affected, but my mind is - can’t remember anthing and recent attack of neuritis left me with permanently damged vision in left eye…no medication so far, but forthcoming appointment to consider DMD in August.
Diagnosed 4 years - after a review of my history, my neuro has recently begun to admit the possibility I may have had it 24!
If that’s really the case, the only significant thing to happen on the 20-year anniversary was I finally got diagnosed! True, it was getting not-so-easy to ignore by then - most people are diagnosed when it’s playing up, for obvious reasons. While it was still relatively well-behaved, I hadn’t been concerned enough to press for answers. I just assumed everybody felt like this, getting older.
My neuro told me everyone’s different and they can’t predict but most RRMS lasts about 15 years and then it may change to progressive.
I had my first recogniseable “attack” in 1994.
Wasn’t actually diagnosed until 2005, RRMS.
Then 2 years ago I became Secondary Progressive.
So this means I’m absolutely average!
I thouhgt I was very “special”!
Still do really (but I’ll keep it to myself)!
Take Care All
and try and stay cool!
i was rrms for 13 years then changed to spms with relapses,my relapses got more severe over time,theres now a ? if im still rrms or spms,all i know is i was diagnosed 22 years ago,but can trace symptoms back to the age of 14,so i may even have had it 42 years !!! god i feel old lol
I was told that 85% of RRMS’ers will go on to develop SPMS in 15 years…maybe this is what they meant. You are more likely to be in the 15% if you are younger when diagnised and if you recover fully from any relapses and if your relapses are more sensory type than mobility type.
Yes, I would think your neuro would be talking about it becoming secondary progressive, my neuro told me that I am less likely to develop SPms as most of my relapses are sensory rather than physical but nothing is ever certain with MS is it? Kate xx
I will admit, this message board topic has most definitely put the fear in me! I think it was very wrong and unprofesional for your Neuro to put a ‘time limit’ on your diagnosis. 20years??
I hope and believe that with a healthy diet, medication, and the yoga (or any other kind of exercise) that you can go your whole life without major / long lasting relapses.
I am relapsing remitting, diagnoised in 2005 and currently been taking Gilenya for aprox 2years - relapse free for aproc 5years.
I’ve been dc. And only had my fist symptom a year ago with 2 major relapses and a few smaller ones I can’t tell when I new relapse really starts My walking been really affected and arms get tired easily so I’m not sure about the 20 years for me x
had 14yrs ago loads of different names until on in left left me blind and then they changed the name to ms but i live for today and forgot tomorrow
I was diagnosed with RRMS in 2007 but have had symptoms since the late 1980s / earty 1990s have just been told by Neuro and MS Nurse that I have now transitioned to SPMS. MS Nurse told me it’s a slow progession. I take 34 tablets a day now for symptom relief and Immunosupression. I was never ill a day in my life before DX.
My OH was told the same about his asbestos plaques…withing that 20 yrs he has lost 5 colleagues to asbestos related deaths so we count ourselves “lucky” in one way as it was over 20 yrs ago when he was told but then seeing him on oxygen and struggling to breathe and knowing it is a slippery downward slope doesn,t really help.
Having said that none of us knows what tomorrow will bring and thats a good thing imo.