Last reply 1 year ago

I know its different for everyone but i wondered how quickly peoples ms has progressed from invisible at diagnosis to obvious ie mobility problems/ wheelchair…i am trying to consider who to tell once diagnosis confirmed…especially work wise.

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1 year ago

@anxious123 , your question is almost like asking how long is a bit of string.

Management of MS is constantly changing with new and more efficacious treatments becoming available. So, anybody’s historic experience is potentially going to be inappropriate. Add to this that we’re all different, it becomes an impossible question.

MS is not a death sentence. And, it is no longer an express one-way ticket to a wheelchair.

My suggestion is to wait and see how, and if, it develops into something which becomes noticeable and then consider who to confide in.

Life always needs pragmatism, but try not to drift into pessimism. 😉

1 year ago

@anxious123 it is different for everyone. I would hold off telling work until you really need to. It has been a year and 8 months for me so far, I am on a DMT and no one has any clue about the MS. Besides fatigue i have not had any further symptoms.

Good luck to you and i wanted to know this exact question myself a while back but unfortunately there is no simple answer.

1 year ago

Dont tell work until really obvious. I managed to work 4 years after diagnosis. I used to limp when walking . Then i started using a cane. I could no longer hide it. When i told them that was my way out sentence since they would not accommodate my disability.

2 years use 2 canes
4 year use walker
6 years mobility scooter and wheelchair

I see people with ms with better outcome. I think mine is bad……
Noone can predict it…..

1 year ago

What the other said… you simply cannot live like that as we don’t know what will happen to us.. (although your question is one I also have asked many times!!) I was diagnosed 14 years ago this week… no one would have a clue to look at me !

Another factor to consider is that you may have some amount of control in the outcome as well. In addition to drugs there are additional things that can be done. Again different for everyone but removing stress, sleeping well, exercising, diet , vitamin d all play a role. Building your brain reserves to help you recover from future attacks can all impact things. Our family follows OMS ( but there are lots of options that may help with progression. In addition new therapies and knowledge are coming out quickly.

1 year ago

How long you stay mobile depends on where your lesions are located. For instance I have one lesion just touching my optic nerve, when I was diagnosed, I had a hole in my vision. After starting on Rebif the hole closed up. I was diagnosed ten years ago and the neuro and I thought I had it for quite awhile before I was diagnosed. I am 64 and don’t use a cane yet, I know someday I will, I am slower at walking now and can’t walk as long as I use to. I had a aunt who had MS for 40 years and was just using a cane when she died. So you can’t automatically assume that you will end up on a scooter especially with the new DMT’s available. Potter

1 year ago

I agree with only telling people when you need their support, try and stay positive. My story is that I had two relapses of optic neuritis each a year apart and didn’t cope with diagnosis very well, I struggled for two years which ended my marriage and I couldn’t see a future. I was 25 years old.
Fast forward to today, I am now 46 years old and still you could not tell I have ms. Very few people know I have it, my husband, close friends, my immediate family & my boss at work in my day job. I had my third relapse last year, in my left foot, (first one in 20 years) and have been on Copaxone since Feb. I’m hoping for another 20 years to my next relapse. No-one I work with has a clue!
Everyone’s journey is different, I understand that. My older sister also has ms and her journey has been very different. Do the best you can to stay fit and healthy.
Please try and stay positive and don’t believe that ms is the end when it could just turn out to be a minor inconvenience. 🙂 x

1 year ago

I know this is a question we all ask, I think this should make you think more about today, find job with will possible be ok with wheelchair (like sitting positions) banks or similar, make sure you will do stuffs you want to do before it happens ( don’t mean it will) like going to places are impossible to get in wheelchairs. Remember future is uncertain for everyone, but don’t look back in 5,10 years and say only if I known. Time is now 🙂

1 year ago

I told my boss after I was diagnosed, because I was missing so much time for the MRIs & then the lumbar puncture put me out for almost a week. Then I was put immediately on solumedrol & it was not hard at all to notice something was up! I had worked for my boss at that time for nearly 12 years so we are close. I’m very lucky in that regard. When he can, he tries to help me keep my case load manageable so as to not over-stress me. Doesn’t always work but I appreciate his consideration for my health, he is the best boss I’ve ever had. I told a few close friends & family, but didn’t really make it widely known until last month actually, when I did the MS walk and told people why I was fundraising. I was very humbled by all the support I received. It was a life-changing experience, almost even more so than being told I had MS.

I think stress & vitamin D are key, at least for me. I can tell when I neglect to keep up with the D supplements. For me, I think the cog fog makes a stronger appearance when I forget that for any length of time (like now). But, who really knows if that’s real or just my perception. Everybody is different & a lot of stuff can’t really be measured. I’m not going to have my D level checked every 6 months (my insurance will cover everything else but for some reason, they won’t cover the blood test for vitamin D), so I just try to remember to take it, try to keep stress at bay (or at least have stress-coping mechanisms), keep up with exercise & eating right and hope for the best.

– Michelle

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