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?

Also don’t lecture him
about taking it easy and not doing xyz. Drives me insane when my parents do this!

I would't dare!

I’m probably not the person you want to hear from.

My late husband had PPMS diagnosed in his early 50s. We knew it was aggressive and the prognosis was poor. He lived four years before succumbing to sepsis from a chest infection.

He lied to his mother all the time pretending things were fine and hiding how bad things were, (she was similarly far away.) I used to live in fear of having to tell her anything bad had happened and I felt relieved when she went first, not that I wished harm on her.

He will be lying to himself as well as lying to you. I’m sure you are absolutely devastated, as well as very proud of how heroic he’s currently being, but it’s not real. Encourage him to take all the psychological support on offer. If he has a partner or children ask them what they need, too. He will crash.

Yes, many people manage their MS well and live relatively normal lives. I sincerely wish your son is one of the lucky ones, but it’s much too soon for him to have worked through this new diagnosis. If you want to be a help and support don’t pressure him to be heroic about it, even if you desperately want him to be. Look up toxic positivity and make sure you are on the inside of his support network, not a drain on it.

I’m sorry but I absolutely disagree with the PP about DS lying to you. He may not be. He may have the feeling that there is little he can do about it, other than get on with life. Sometimes it’s hard but it’s absolutely not the end of the world. Treatment has made huge advances in the last few years.

I have MS. It was suspected when I was 18 but diagnosed when 26! It became aggressive and was quickly progressing. However I was then offered treatment which has changed my life as I’m not relapsing and have a normal ish life.
when I was diagnosed I thought it was the end of the world but it honestly isn’t. There are so many drugs for it now and MS nurses are fab! I do think my diagnosis was harder on DF than me in a way though so can see why you feel as you do. If you can help your DS with day to day stuff and be an empathetic ear I’m sure that will mean a lot to him!

The diagnosis is less than a week old, of course he’s not fully processed it, even though he may wish to be optimistic and courageous. Any chronic condition involves a period of adjustment and a sense of loss.

OP, I used to be part of a Facebook group called The Other Side for carers of MS patients. You or others supporting your son might find it helpful.

My DH has MS and I work in a healthcare
related field so know a lot about it. He’s mid 40s and had a few bad relapses a few years ago and went on Mavenclad. Firstly, make sure he is seeing a great neurologist that specialises in MS (many at local hospitals don’t). Treatments are really fantastic these days but not miracle cures of course. He does have some permanent damage from relapses, mainly impacting his eyesight but he can still live a normal life at present. Only close friends and family know about his MS and we’re fine with this. We’re both very positive people, but his mum is a massive worrier, and she actually drains me when she mentions his MS often - it’s a lifelong condition that we don’t want to be reminded of all the time. Practical help
is of course appreciated but it’s very important to make sure the MS doesn’t define him.

A few ramblings from someone diagnosed last year, but likely had ms for thirty years since a bout of optic neuritis.

Make good us of the ms nurse. In my experience, they have been wonderful. They can discuss treatment and arrange the medication. As an aside, there’s a whole new world of medicine delivery I knew nothing about. My meds (Tecfidera) go nowhere near my pharmacy but get delivered to home.

Stay away from the parasite cleanse, cure ms through diet etc websites! MS Society has a great website and I think a medication decision making tool. I was surprised by the autonomy I had over my treatment. I was given a list of treatment I was eligible for and had the choice. I’ve gone for tablets as infusions would be difficult due to where I live.

Practically, he needs to inform the DVLA. They will contact his neurologist and will probably issue a three year medical license on their recommendation. Also inform insurance company, some don’t care but some do. There shouldn’t be an increase in premiums. I was unaware of this, but if you have ms you are automatically classed as disabled under the Equality Act 2010. This means he has rights in the workplace as regards reasonable adjustments. I told my work immediately but not everyone does, a personal decision to make. If he tells his workplace, it’s worth getting an occupational health referral and I found them really helpful. For example, they made various recommendations to my work such as any ms related absences do not count in overall absence.

I have got some great support and advice from the MS Society Facebook group. Even just to rant anonymously when someone has said something crass!

The first thing my ms nurse said to me (an hour after diagnosis) was to make sure you advocate for yourself. Don’t let others tell him what’s best for him, he gets to decide that. It was useful advice at work when well meaning colleagues tried to tell me what to do for the best for my health.

Even with the most positive of attitudes, there will be dark days. It’s a lot to come to terms with but it gets more acceptable with time.

Please feel free to private message me with any questions.

I have had Ms for about 25 years. I started on rebif about 8 years ago, then tecfidera and now Kesimpta. You wouldn’t know I have it even after all these years. I’m running Paris marathon next month, I go to the gym each day, member of a cycling and running club. I do find that things like colds hit me hard and I might end up spending a lot of time in bed as the fatigue is crippling but overall I really can’t complain. I wouldn’t change anything unless you absolutely have to and there’s no point in worrying: I go the Ms therapy centre for oxygen therapy so I do see the bad side of the disease, but it doesn’t happen to everyone ( I have RRMS) and my advice is do what you can. While you can.

my bff has MS, he 'refuses' to give into it and is part of the currently ongoing drug trials.

He's lost feeling to his knees/elbows and relies on visual confirmation he has hold of things.. he struggles with chronic pain, but still walks everywhere without mobility aids, still drives, he just has to pace himself more and factor in rest days.

We were talking the other week and his dr had told him about another patient that is less affected by his MS than my friend, but who has 'given up' and is now pretty much in a wheelchair.

Everyone is different, so long as your son keeps a 'can-do' attitude he will and can keep going and doing while he is capable.

I note your comments re mum's comments. My idea is not to mention it at all unless he does. I.e. don't keep asking "how are you?" Close family know but I am thinking of asking them not to mention it to him unless he does. Does that sound ok, or should I just leave it. TBH its rare we meet other family members in person, ususally just text or WhatsApp messages.

Update: Its been a year since DS diagnosis and he has done really well. Visiting him in November I saw he had a cold and wondered whether he should visit doctor. When I asked he said he wasn't going to for a cold. I kept my concern to myself at that time. He went on to have a small relapse, the return of some symptoms. He visited doctor who has made arrangements for another MRI on the 5 Jan but decided not to prescribe steroids as symptoms were minor. Next time he has a minor cold he will revisit doctor.

During this year he got engaged to long term girlfriend has they have bought a home together. Life goes on.

glad to hear he’s doing well. I never found steroids helpful for relapses. The side effects were not worth it. And they had little effect. I still wouldn’t dream of going to the doctor for a cold. It’s very common to have a flare up when you are unwell. It was pass.

My BIL was diagnosed in his late 30s. He’s now 43 and has since had a baby and lives his life as before.

Genuinely really happy to hear this update!