Hi, so I was told the news four days ago that I have relapsing MS - probably have had it for 20 or more years - I’ve had bouts of uveitis, stiff back, vitreous detachment and fatigue - not pleasant, but all very manageable. What I want to ask is if anyone is in a similar situation as me? ie gone through decades not knowing they have MS. And also, I would really love to hear from anyone whose MS is not ‘too bad’ - if that doesn’t sound too trite, or at least isn’t too impactful on their life. I have yet to start treatment, so maybe I am being too positive/hopeful?
I’ve had symptoms for approx 28 years, diagnosed approx 14 years ago. My MS has been slow to progress with only three relapses that meant I had to have sick leave from work. Other relapses were mainly sensory which I ignored and was able to work through.
I had to retire six years ago as my mobility had worsened and I was suffering severe fatigue. The best thing I ever did it took around two years to recover but I now feel better than I have for ten years. My advice would be to work as long as you can ignore your MS for as long as you can but listen to your body, it will tell you when to rest.
Best wishes
Jan x
It’s a lot to take in, isn’t it? I was diagnosed in my early 20s and this was 15 years ago. I thought life was over and I’d be in a wheelchair etc within years. I was scared stiff… I’m nowhere near a wheelchair. In fact, I’m climbing mountains and work full time, raising my children. You wouldn’t know i had MS if I didn’t have MRI evidence plus occasional brain fog I’ve been put on mavenclad after tecfidera stopped working and this was only shown on my scans plus two episodes of nerve pain. So yes, i feel very well 15 years on… Hope you are going to have a manageable experience too. Katy
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I was diagnosed last year but looking back I think I may have had MS for years. My big toe has been numb forever and my husband reckons I have had balance issues for a long long time. It was the onset of fatigue that took me to my GP in the first instance. Other than balance and fatigue my symptoms are few and far between (the occasional ‘numbness’ around my mouth and brain fog as I call it). I’m starting Ocrevus infusions in 3 weeks so fingers crossed, my symptoms won’t progress.
Hi Anon, like you Ive been living with MS for 20 years+ but only got a definite diagnosis last month. My MS progressed very rapidly and Ive been a full time wheelchair user for around 18 years. I`ve had ups and downs and had good support from hubby and carers. Although I am quite limited in my abilities, I don’t have some of the symptoms I read about. I hope the Ocrevus helps xx
I’ve had symptoms for 40 years, began considering it to be MS back around 2002, and got confirmation of it this past fall. The only reason I pushed for the diagnosis was because I finally reached the point where it was interfering too much with my job, and I knew I’d have to quit working and start collecting government benefits. I knew that there was something wrong with me all those years, but other people didn’t. If you’re still functioning well, keep on going for as long as you can. Some people with MS never wind up in wheelchairs, so don’t envision that for yourself at this point. You have a diagnosis now, but nothing else has changed.
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I know someone who has ms and still works 20 hours a week and to look at her you wouldn’t know anything was wrong with her. I haven’t had ms for long and it isn’t causing too many problems at the moment. I work for myself so if I am having a bad day I can take the day off
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Sorry. I can`t think of anything positive about being diagnosed with MS.
Just a case of making the best out of a bad situation.
My only advice is to focus on the future and not dwell on what you were capable of in the past.
‘Manageable’ is the important word here… I am 56 now, diagnosed when I was 40, but symptoms since my early teens (one and another -diagnosis- delayed because of emigration from Holland in 1995). Only because of the fact that one of my children has severe-learning-difficulties did I give up my job (a job as a carer in the last 5 years), although I was understandable not their favourite carer anyway, this due to the fact that I could no longer go on trips etc.(mainly because of weak legs) or perhaps even more my lack of cooking skills… Still, I wish I had never given up that job as sitting at home does not help me! (but thank God I married a most wonderful and understanding lady!), especially as ‘my’ MS (officially PP) seems to have been fairly stable over the years for as far as I am concerned.
Now my daughter has moved out (under the wings of Social Care btw) I would not mind getting back to P/T work, this to still feel part of society! Unfortunately, I have become older and the gap that has been created does not help! Still, as I can still drive a car for example, I am still on the outlook, as I still feel able to do some kind of job…, I have always hated to be on benefits!!
Therefore, keep on going for as long as you can and also, do not quit your job, if applicable, too quickly (as I did), it’s not your fault!! Good luck, or maybe it’s better to say, ‘keep on going’, as I think that for most of us, it is still not the end of the world!
For ‘MSers’ who have a more aggressive kind of MS, please do not take offence when I am saying ‘It is still not the end of the world!’, as we were befriended with someone who was that unfortunate, and belonged to that relatively small group of MSers having the aggressive kind of MS.
I was much happier with my MS diagnosis diagnosis than when I was told I had HSP…a mistake but it carried a 50% chance of being passed down to my offspring.xxx