Hi everyone, I was wondering if anyone is happy to share what your day-to-day life is like with relapsing-remitting MS? I’ve recently had an MRI which has shown signs of demyelination meeting the “distribution in space” criteria for MS, I’m waiting for a follow-up with neurology and a lumbar puncture to confirm the diagnosis but from what I understand, they seem pretty certain that it’s MS.
I’m really unsure what to expect as I don’t really have any symptoms other than tinnitus (that’s what the MRI was for). In 2021 I had what I thought was long covid for about 8 months, my GP has suggested that given the results of the MRI, this may actually have been an MS flare-up. But apart from that I am fit and healthy, and not experiencing any of the typical symptoms of MS.
So I guess I’m wondering, what if anything is likely to change for me? I know it’s really hard to predict as everyone is different, but I would be really interested if anyone is willing to share a little about how you feel MS actually affects your daily life. I’ve tried googling this but all I get is a load of articles telling me that people with MS can live “mostly normal lives”, which doesn’t really help me - I want to know more about what that “mostly” means!
I would be especially interested to hear from anyone who was symptom-free or had only minor symptoms when you were first diagnosed. Did that change at all for you, and if so was it a quick or a gradual change?
I hope that all makes sense, and I hope this is ok to ask about. If I’ve been a bit clumsy or insensitive in my phrasing then I apologise, I am autistic and struggle to judge tone!
Hi again Woodsie and you are absolutely not clumsy in your phrasing. For what it’s worth, you come across as being considered and also very sensible in thinking about MS and what it might mean.
What life like with RRMS. Think I might have mentioned some of this before but anyway- for quite a few years after diagnosis I did carry on pretty much as before diagnosis. My optic neuritis faded away and I had no other symptoms at all. My now wife tells me that I used to get tired but to be honest I put that down to 9-10 hour work days ( I enjoyed my work!). Then some years later when out shopping in town I suddenly found my right leg stopped working properly- it was a bit of a struggle to move it. Over the years and some 18-19 years since diagnosis it’s now a bit of a struggle to walk more than 10-15 minutes but e.g I do my share of the housework and just been out cutting our hedges. It is an effort but I manage. Other symptoms: if I need to pee then I need to get to the toilet quick (I seem to have lost some bladder control but so far I’ve had no ‘accidents’ and if we are our shopping or whatever then I always take note of where the toilets are). I get episodes of constipation ( a MS thing) but nothing serious and easily resolved. Heat can tire me and I’m not brilliant with noisy, busy warm places ( too many things for my MS brain to deal with) but e.g I was out with a friend for lunch and a few wines in a fairly busy restaurant this week.
What else? To some extent it’s hard to say. I can sometimes tire easily but as my MS Nurse said this week ‘you are getting older’ - turned 70 this June. Nothing terrible has happened to me but I do have days when I just don’t feel I have much energy to spare. Having MS and never knowing if and when I might experience a sudden decline does create a feeling of unease and uncertainty. I’ve sort of got used to that but do worry about the next 10 years leading up to my 80th. To put things into perspective though, and as a result of other health issues, several of my old work colleagues and friends didn’t make it to 80
So for some 5 years or so I wasn’t affected by any symptoms and then suddenly found I had trouble walking for more than 30-45 minutes. Since then the time and distance has declined slowl. I’m also finding that I sometimes have problems with ‘fine motor skills’ in my right hand but I doubt if it’s noticeable to anyone.
My MS treatment (A weekly injection of Avonex ) leaves me feeling a bit drained for 1-2 days so I just take it easy.
Not quite sure what else to add but feel free to ask anything.
Hi, I wasn’t diagnosed until i’d progressed to secondary ms, and if they have already diagnosed you and could put you on treatment there is every chance you won’t progress. When I had rrms I had some flare ups as I can see now, but I’d always find a reason…double vision = using paint stain for windows, maybe not enough ventilation, Walking funny = my daughter not walking in a straight line, Fatigue = just being lazy or too many late nights etc so I have led my life as anyone eles, and so should you. Take what help is available, be aware of your condition and listen to your body, but on the whole carry on regardless x
I have MS. I had two relapses before being diagnosed but my latest relapse was in 2022. No relapse since then and I started plegridy in January 2024. So, quite frankly, if I didn’t inject with plegridy, I wouldn’t even feel I “have a long term health condition”. Of course I know I have RRMS but I take my DMT and the condition does not define me. So far so good, I even hit the gym 4-5 times a week for 1-hour exercise classes. I am 44 years old. My first relapse was in 2020, when I was 40. I hope that the DMTs allow me to keep reasonably well for years to come, fingers crossed - decades? - but I know that MS is so unpredictable. I just try to enjoy life as much as possible.
Hi Woodsie
Pre diagnosis I had a feeling of being a little off balance when walking. It was manageable but a little concerning. I thought and was hoping it was an ear problem that would be sorted with a few tablets.
An MRI about 6-7 weeks ago suggested otherwise.
I also had a twitch in the calf of my right leg which I never really noticed unless I watched it. It certainly gave me no issues.
Following my diagnosis of suspected probable MS I have suffered with fatigue and also a feeling of weakness in my thighs and also my arms. I was also diagnosed with Type 2 diabetes 2 months prior though and so I have been dieting, 6 - 7 Kg loss.
So either Ive had my first relapse which has come at the same time as my diagnosis and also the hot weather or it is just a big coincidence on the timing, or I lost weight maybe a little too quickly. I mentioned all this to my neurologist and the answer was that she didn’t know !
Just like yourself it is all very new to me and as you will quickly find out there are very few definite answers. MS is so variable person to person.
I saw my new neurologist last week and he warned that a lot of people can become hyper sensitive. Ie. every itch, twitch or tingle can get focused on too much.
This is something I have found myself doing. I now try to take note of these things but don’t stress unless they become more frequent. It is not easy though.
I am personally struggling mentally with MS as this is all still new but hoping to improve with time. I have found talking to people on this forum and listening to their experiences and advice a massive help and I would recommend you also continue to do the same.
In my long winded way I guess I’m trying to say just try and carry on as normal within your limits. I find I am different day to day.
I also find it too easy to just sit about moping and so I now force myself to get out of the chair and do things, this also helps as a distraction.
As I have said this is still all new and so I have very little experience to pass on.
I am hoping to start a DMT within a month or two so things will likely change again for me to some degree.
My main focus going forward is a good diet and also exercise when possible. It may not help but with that and also a DMT I at least feel I am doing everything I possibly can to fight this unpredictable disease.
All the best
Dave
Thank you Dave, I can really empathise with what you say about focusing on every new little twitch! Since getting this news, every time I feel a little bit off I think, is this an MS symptom? I’m just trying not to overthink things too much, but just to take note of anything that seems off for when I eventually get to see a neurologist (I’m on a waiting list but was told I probably won’t get seen until December).
Like you, I am finding it helpful reading this forum and seeing other’s experiences. As you’ve said, good diet, exercise, and otherwise carrying on as normal seems like the best approach really!
