DS diagnosed with MS. Advice appreciated.

[ItWasnaMeGuv]

He first exhibited alarming symptoms just before Christmas, loss of feeling in leg etc. Got MRA in January and as a result of that had lumbar puncture a few weeks later. Last week got the diagnosis confirmed and had long chat about options re medications. It's life-changing but his attitude is "it could be worse". It is a good attitude to have. He is scheduled to speak to an MS nurse this week. He has an active physical job which he loves, and loves challenging hill walking with friends. How long can he do his job? His hobbies? How can us family help, bearing in mind we live nearly four hours drive away?

Impossible to say at this stage - and no two people are the same - the latest treatments are much better than anything ten or twenty years ago.

That's a good point. The doctor said that there have been great improvements in the past 30 years (his age now). He said to prioritise staying healthy, fit.

It must have come as a shock to you all and I hope you are ok. As PP said, no two people are the same. I was diagnosed in 2019, got on treatment shortly after and have been very fortunate ever since to have lived my life exactly as I did before. I work full time, have primary age kids, travel, have hobbies, exercise, don’t require any support at all. MRI scans show that the treatment is working and I can’t predict the future any more than anyone else can so I just carry on as usual. MS nurses are angels, he can always call them if he is worried about a new symptom etc. Research is incredible and moving at a fast pace. Really wish you (and him) all the best.

My DS is in the same position. He started with symptoms 8 years ago, diagnosed a year ago.

I was devastated, but I’m trying hard to stay positive and he is doing well in remission.

It really is a case of trying to stay positive, not catastrophising, trusting the experts and looking after his mental and physical health.

Good luck to you and your son.

My DS isn’t on any treatment, which has surprised me.

How old are you and how old is DS?

I have known a few people to be diagnosed over the years and seen their lives affected in different ways. More recently I had a school mum friend who got diagnosed about 18 years ago in her early 30s and she's doing ok. Sometimes I have seen her walking with the help of a stick but no drastic deterioration. Obviously I don't know her life on a daily basis but I think she does amazing she's 53 now.

Have you any thoughts on moving nearer or have you other commitments. They're may never be a need. People with debilitating illnesses and disabilities can live very independent lives. As a mum you would prefer it to be you going through it rather than one of your children though.
My earliest memory of MS was Stuart Henry on Radio Luxembourg in the 80s he really raised awareness.

That's really positive, @Squaffle . DH and GF are in process of "settling down" buying a home,getting married etc. I just want my boy to live a happy and fulfilled life.

I had to smile at your question "would you move to live closer". I can just see his face if I suggested that . No, not in the short term. He is 30. I think if he needs our help, he will ask. Thanks for your positive comments, really appreciate it.

My son had an accident at 18 and has been wheelchair bound since I am the last person he would ask for help. People can live amazing independent lives now but for a mum or a parent it is heartbreaking. It's not what you dreamed of for your children whatever age they are. 💐

DH was diagnosed over 30 years ago, and worked up until 5 years ago. There are a few clinical types of MS, and it can affect people differently, so best to speak with the MS nurse about potential therapies depending on type. Eat well (no faddy diets), exercise and get enough rest. MS society have useful info.

My BF was diagnosed 20 years ago. Yes she has bad weeks but works full time, has an active social life and numerous holidays a year. His priority should be a career change I think.

If he gets on a strong medication, life will hopefully settle back down for him fairly quick. I was diagnosed at 31 (now 39) and have been on a treatment called Ocrevus for a long time. No one would know I have MS and I’m at zero on the disability scale. This medicine has been amazing for me - of course MS is different for everyone but there are several really effective treatment options that can help keep life going relatively unchanged. Wishing you all the best!

I was diagnosed 4.5 years ago - came as a massive shock (I limped into A&E - and within 24 hours was told I had MS!). Initially went on a conservative treatment (Brabio - three injections a week) as I was hoping to get pregnant again, but my MS was very active and within a few months switched to a stronger treatment (Ocrevus - one hospital infusion every six months). I won't lie - I get tired a lot easier than I did (especially cognitive fatigue) and I have daily symptoms (e.g. pins and needles, difficulty with word finding) but life goes on... Everyone's MS symptoms are different and so it's hard to say how your son will be impacted, but I would definitely recommend he joins some online groups as there is a real sense of community in the MS world :) good luck to him - hopefully he can start an effective treatment soon which will reduce the frequency and severity of any future relapses xx

My DH was diagnosed a few years ago in his late twenties. We have since married, had a child etc so your DS can lead that normal life you want for him. Obviously no one knows the future but my DH just goes into hospital once every 6 months for an infusion and luckily that’s been working and he’s had zero deterioration. You’d never know by looking at him.

Youll be in shock for a while and it’ll feel very unfair, but just wanted to give you a story of hope.

MIL has MS and has not done any of the physio or anything advised really - your son definitely should… Treatments these days are way better than when she was diagnosed too so hopefully prognosis is better than ever.

DH was diagnosed a few years ago (late 30s) and hasn’t had any relapses since the episode of optic neuritis that led to the diagnosis. He’s on a DMT that involves him giving himself an injection once a month (like an EpiPen) and you’d never know there was anything amiss - he’s very active and works full time. He’s told very few people about his diagnosis as he’s not keen on the pitying looks.

There are so many new treatments and research seems to be moving really quickly at the moment. I know MS is a frightening diagnosis because so much is uncertain/unpredictable but try not to worry and just take things as they come.

Thank you all so much for taking the time to tell me your experiences and stories. I do feel a lot more positive and reassured.

I've had MS since 2007 and I'm pretty healthy. A few balance issues occasionally but mostly I forget I have it these days. There is a great social network called https://shift.ms/ which is specifically aimed at people with MS supporting others, it's a great resource for questions that he might have. I'd also really encourage him to look at https://overcomingms.org/ and start to make some dietary changes.

I've also recently been taking reformer pilates classes which have improved my balance enormously.

Everyone's MS is different but there is every likelihood that he will live a really normal life x

I was diagnosed 6 years ago at 25. I'm on 6-monthly Ocrevus infusions now and haven't had a relapse since. I have a very cognitively demanding job, run marathons etc. MS doesn't mean everything necessarily has to come crashing down.

It's very important your son gets on a good medication. I would suggest Ocrevus (or Kesimpta, which is basically the same thing) or Lemtrada or Mavenclad. I was a bit too risk averse for Lemtrada because the side effects seemed scary, but wonder now whether I should have because it's generally a 'one and done' treatment rather than being constantly immunosuppressed. MS hasn't limited me at all so far, but the effects of the immunosuppression have affected my life slightly (shingles, HPV, not being able to have live travel vaccinations, worse COVID etc) so that's something to consider.

But as long as he gets on a treatment, I think you can be very reassured the future is still bright. MS isn't half as scary these days as it was in the past. I was terrified when I was diagnosed, but my life now is so happy and I barely even think about this diagnosis.

Thanks @Scramblelina and @ammpersand, great information and reassurance .

hey @ItWasnaMeGuv My DH was diagnosed with MS when we were in our early 30's but actually his symptoms dated way back to when we were in our 20s. He's doing ok and has only recently had to start taking meds. However, I wanted to post to ask how you were doing? I was a wife/partner and had all sorts of omg thoughts as it is a variable condition (and at the same time, massive strides being made). But it must have been a worrying moment for you - your maternal drive to want to make everything ok doesn't equate well with MS (plus your son is an adult!). So, if you need to use this thread to rant a bit - (as a mother) please do!

ETA - obviously its your thread so you don't need my permission or suggestion to use it how you want - sorry got my phrasing all kinds of wrong there!

@myrtleWilson I have taken my cue from him. Mirrored his attitude but also let him know we are all here for him. Black humour helps, too. His comment "I wonder if I will be driving in 20 years time" I replied with "hey, no citizens will have access to cars in 20 years time, it'll not be an issue". I guess is concern will be when the next "flare" will happen. Its all unknown.

I don't have MS, but as a wheelchair user who was also very into hill-walking and climbing I wanted to say there are still options for his hobbies if he becomes a wheelchair user later!
Lots of very cool (expensive - he can hopefully save up, or some people get them through access to work) all-terrain wheelchairs on the market that really enable hikes etc. Some names are the Omeo, the trekinetic, the mountaintrike (these are at national trust places which is great), the notawheelchair rigs...
And these are situational tools, so if for example he could still walk enough to get around in day to day life, but couldn't manage a hike, he could in theory get an all-terrain wheelchair for hikes etc to keep up his hobbies.
Adaptive surfing is also, surprisingly, a thing, and great fun for the outdoors adrenaline rush.

I was diagnosed completely out of the clue in 2012. (Did a research study for a university and it came up on that. Stated causing an issue about 18 months later) mine escalated but my then consultant was very pro active, got me on the hideously expensive IV treatment and I’m fine most of the time. Still work full time as a nurse, 12 hour shifts. It’s hard going at times and flares up from time to time. But it’s really not the end of the world.

A positive attitude is essential.