Do peoplet still work with Ms? (Early stages)
Seems an odd question but yes.
I was Dx last Oct and already in employment, I’ve continued to work. The likelihood is that my first proper relapse was nearly 10 years ago and I was employed then and continue in the same job today.
I have had a few extra changed to help me stay in work such a desk move and new peripherals but there’s been no change other than that.
I know a lady who has had a Dx for a long time. She struggles with mobility and pain a lot and she is still in work full time. Again some changes have been made for her to remain but remain she has.
Of course they do. Modern DMDs mean that RRMS can be more or less brought under control. Even PPMS and SPMS can have a slow progress and people are able to continue working with an MS diagnosis for years and years. Other drugs can also help - Amantadine (or Modafinil if you can get it) for fatigue, neuropathic pain killers like Pregabalin can help, anticholinergic drugs can stop bladder spasms. I took all of these at different times and worked full time. I was working way more than standard 9 to 5 hours and driving all over the country until I reached a point where I just couldn’t do it any more. And that was in the bad old beta interferon or Copaxone only days.
Now that Tecfidera and other drugs (Tysabri, Lemtrada) are available, people often find they are living relapse and serious disability free lives. And even when people are disabled, they are often capable of work. Many people can’t afford to not work so basically have no choice.
Apologies for odd question. I have only encountered people with advanced Ms so just wanted to ask
I wondered where you’d got to. Too busy working?
Well at least someone did…
14 years down the road. Now SPMS & still working. It can be hard. An understanding employer helps. Paul
This is my worry, as I say i have only encountered people with advanced stages of MS who cannot work. I am self employed so not working isn’t an option for me
no need to apologise for asking a question related to your experience, lots of us here are sensitive but with a thick skin!!! I worked for about 15 years after diagnosis. My comment would be thatI had a very supportive line management team and we trusted each other sufficiently that I would not put anyone into any dodgy situations. When it was becoming more obvious to my colleagues that my condition was changing we worked together to adapt, and when I could no longer deliver enough despite our new ways of working my company helped me to sort out Ill Health Early Retirement (IHER) So I think it all depends on you/ your job / your employer and how lucky you are.
Good luck Mick
My ‘MS and work’ experience has been very much like Mick’s (although I didn’t last quite as long).
An understanding employer is a blessing - unfortunately the self-employed do tend to find themselves working for a slave-driver! And of course self-employment has particular challenges in terms of balancing health and keeping clients happy with not much slack in the system in terms of available time and effort.
But then self-employed people do also tend to be pretty good at being imaginative about problem-solving and finding a way to make things work, don’t they? Star, I hope you make it work for you for a long time to come.
I was diagnosed with RRMS in Feb last year. I have cut my hours down from 37.5 to 30. Worst symptom for me is fatigue and I am struggling so much with it at the moment. Perhaps I should start playing the lottery.
Yes, diagnosed with PPMS 3.5 years ago, EDSS 6.5, still work part-time (3 full days and travel to work). Jo x
Thanks Alison x
Thanks Mick x
Yes of course. It can be tolerable on early stage.
Wasn’t me, had to be someone…
It’s a funny thing. Some people can and do, some people struggle and still do, and some people (me) can’t really anymore and wish they could. Work! Vital for providing a living, but gives so much more in self belief but we only realise too late. I miss people and just being involved, funny old life. You will have to follow your own path x
Yes was diagnosed last July luckily I had changed jobs a few months before less hours easier pace, on Lemtrada RRMS can hit Fatigue if I push myself which I do a bit to often and get told of for it, work have been great since I told them all good for me
I work full time but I’m very lucky I have an amazing boyfriend, family and bosses ! My adjustments like work from home and air con in my office all keep me at work! I am also lucky because I work in schools so I get the holidays which offers a very welcome break regularly. I have RRMS and am on Plegridy. I really hope whatever you choose to do Star it works out for you and you stay in the best health you can x