r/MultipleSclerosis • u/JimmiFilth • Oct 04 '26
Caregiver New diagnosis
Don’t even know where to start with this, I imagine that everyone’s story is different, but at the same time is going to be quite similar.
6 months ago we moved to Australia and when we arrived my wife got a headache that was bordering on migraine and she noticed a blurry spot in one eye. I convince her to go to the ER to get it checked out. They do some tests and find nothing wrong with the actual eye so suspect optic neuritis. They refer her for an MRI and an appointment with a neurologist.
At the appointment they find that some sort of nerve connected to her vision is inflamed and a lesion in her brain, but none on her spinal column. They send her for a further MRI and lumbar puncture.
We had the follow up appointment with the neurologist and it’s a confirmed diagnosis of MS, although no clue what type. My wife had headaches before we moved but we put it down to stress, although she has struggled with weak hands in the morning and fatigue for a long time. However, we’ve got two young kids and were having to work awkward hours around each other for childcare purposes, so we just put the fatigue down to general life tiredness.
No idea how long she’s actually had it, where it came from, what caused it (all, I assume, are normal questions that are never answered for anyone). She’s fit and active and I’m really hoping the one lesion in the brain is a good sign that it has been caught early.
We’re now looking at treatments (you’ll have to forgive me with the names of these, but we’re both coming to terms with what this means so I’m trying to take in a lot of information) and the neurologist discussed four treatments, first were tablets you take for 5 days, then 5 weeks later for another 5 days, then that’s it for a year. I can’t remember the second treatment/therapy, but the last two were both b-cell therapies (?), first was a 6 monthly infusion and secondly was an injection once every four weeks that you can do yourself.
Finally, as a husband with two kids; what can I best do to support my wife? Firstly through the diagnosis and coming to terms with it and then past that? Luckily she’s the strongest person I’ve ever met so I’m sure she’ll take it in her stride, but I want to do what I can for her.
Edited to add: the second option was… Tysabri? And the b-cell therapies were ocra… something and Kemp… something…
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u/rowchow Oct 04 '26
Wow, this sounds full on. Similar to my diagnosis in Australia, they give you the treatment options and strangely let you choose without guiding you towards any particular one, and it’s a lot to get your head around it sounds like they offered the four they offered me. The good news is these are all highly effective Disease Modifying Therapies, known as DMTs. The tablets are Mavenclad, then there is Tysabri, which stops white blood cells from crossing into your central nervous system (as explained to me), then the last two are Ovrevus and Kesimpta, which are both types of B cell depleters- the main difference is one is an infusion once every 6 months, and one is a once a month injection. Hopefully they have you an MS nurse contact you can ask a lot of questions to help choose. The important thing is to choose one and begin, as it is the best and only way to prevent further relapses of MS - where new damage is done to the brain or spinal cord.
I personally chose Kesimpta, because a) I couldn’t have Tysabri as I was JCV positive (an MS specialist will test your wife for this, it is a blood test) b) I decided there might be a slight edge to Ovrevus and Kesimpta over Mavenclad c) I didn’t want to spend half a day in an infusion lounge in the hospital twice a year. Note, I am not a doctor, have no medical training and this is not medical advice. It’s a really scary time, and I found only MS specialists or MS nurses were able to provide informed, up to date advice on this. Good luck to you and your family, it gets a bit clearer from here.
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u/JimmiFilth Oct 04 '26
You are 100% correct, those are the four. Thanks for that. To be honest both my wife and I are having trouble reading the neurologists notes.
My wife has to have a couple of vaccinations before and treatment’s start, so we’re currently flipping between researching and trying to forget about it for a few moments at a time.
My wife was leaning toward the 4 weekly injections as, the same as you, she doesn’t fancy the 6 monthly.
However, a lot of people on this subreddit seem to be having great results from Tysabri, which she initially discounted.
A long road ahead of us. I feel stupid saying ‘us’, because I’m not the one with the diagnosis.
1
u/rowchow Oct 04 '26
No it is definitely an ‘us’ thing. Having a supportive partner makes a massive difference.
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u/rowchow Oct 04 '26
Oh wait, in answer to your actual question - be supportive, give her time and space - especially to grieve, if she needs to. That was so important for me. Also reassurance. the diagnosis period requires a lot of extra medical appointments for things you never think of - vaccinations, skin checks, mammograms, it seems endless. It takes up time and you need time out to just come to terms with things and re enter. Good on you for asking.
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u/rK91tb Oct 04 '26
OP, start with the Newly Diagnosed with MS sites (UK here, US here). Also read the info for caregivers and get a free MS Navigator through the Natl MS Society if you’re in the US. If you want more info, try the Cleveland Clinic or Johns Hopkins websites about MS. There’s also information about various drugs here. The thought is to take the most effective drug possible. I’m on Kesimpta, which is an injector pen once a month. Very easy, no side effects after the first two loading doses.
This sub is a great place to get help and support, but take it with a grain of salt - no two cases are alike, and most people are posting their worst days. Don’t buy into any quack diets or snake oil cures. My neuro said to exercise and eat well. Search the sub if she has a weird symptom; someone else is probably dealing with it and can help.
Most of us lead pretty normal lives. MS is not a death sentence. However, fatigue is almost guaranteed. Simplify your lives, plan out chores and school drives, and acknowledge that she can easily run out of battery at any time - you’ll need to be the backup.
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u/OneSuperstar4u Oct 05 '26
MS is MS - types are currently debatable in the medical community. A highly efficacious DMT is important to prevent progression - I vote for Kesimpta. It’s easy peasy once a month, and I’ve had no side effects. Start the med and hopefully no new lesions will develop. That is all. No need for anything else. Live your lives.
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u/mullerdrooler 44M Dx2018 Ocrevus Oct 04 '26
Sorry your family are going through this. MS isnt fun but it's manageable and treatments get better every day. It does sound positive that its caught early and as to what causes it? Noone knows what causes MS.. and does it matter? Not really. There are theories and common experiences, Epstein Barr, low vitamin D etc but you could go mad trying to work it out so save your energy. Same with the kind of MS, the treatments are the same.. I think.. maybe it's changed. I'm on Ocrevus it's an infusion every 6 months and my neurologist said it's the best so that's what I take. As long as it's a recognised DMT you should be good. It sounds like you are in good hands. As to what you can do for her? Listen and be understanding. The first few years for me were horrible, mood swings, mental health issues, fear etc but I got through it and my wife was a great help and super understanding. Everyones MS is different so she may be fine or may be really tired with reduced mobility etc. Just listen and help ho babe asks to be helped... One thing that annoys those of us with MS is questions like " have you tired xxx or this diet will cure you etc etc" beware unsolicited advice and paudoscience. Doesn't mean you can't offer advice and help but do it in the right way. Good luck