I am 25 and was diagnosed with relapsing remitting MS just this afternoon. After eight months of intermittent vertigo, I had what I now understand to be an MS episode - extreme dizziness, disorientation, and weakness/numbness on my left side alongside a sixth and seventh nerve palsy, which lasted for a month. I was diagnosed with RRMS but am struggling to come to terms. It seems extremely sudden. Two months ago, I had never heard of MS. Now I am needing DMTs with lesions in my brain. It is scary and overwhelming.
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Hello @mythh64 and @sc81 from a 72 year old guy who was diagnosed with RRMS about 19 years ago. Everyone’s MS is different but I hope my story provides some assurance.
Diagnosis in later age is supposed to be bad news and I remember well just how scared I felt after my diagnosis but by no means have my worst fears materialised.
My Aunt had MS and ended up house and then bed bound, but her diagnosis was in the days before any Disease Modifying Treatments/drugs of which there are now over 20 and new and better ones are being developed all the time . When I was diagnosed there were just 3 or 4 and those are now considered as of lower efficacy. I’ve been on one of those (Avonex for 19 years)
I can’t say that MS hasn’t affected me but e.g just a couple of days ago I was out cutting our hedges. It was tiring but I am still able to do such things - not bad for a 72 year old with MS? My main symptoms are bladder urgency ( which I manage by simply making sure I use the toilet regularly/ frequently. It’s a bit of a pain but hey ho), constipation ( which I manage through diet and when necessary laxatives) and mobility of my right leg. The mobility thing is the worst of my symptoms and as an ex hill walker the saddest of them. I can still walk around the house but for ease I do tend to use a tri-roller and for getting around outside I use a smallish folding mobility scooter. That is all where I am now after 19 years but for around the first 8 years or so after diagnosis I didn’t experience any significant/ noticeable symptoms.
Anyway, my sympathies to you on the shock of an MS diagnosis but do take heart. With so many new and pretty effective treatments around now living with MS has a far, far better outlook than it used to be .
I expect that you will soon be provided with a short list of recommended Drugs to consider.
Along with use of an MS drug/ treatment it’s really beneficial to exercise and , to my mind, follow a generally brain supporting diet ( in terms of diet - what’s good for the heart is good for the brain!)
Happy to answer any questions etc.
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Welcome! It’s a great place to be! I am very symptom wise similar to you and was diagnosed at the end of may with RRMS, I struggle with balance and dizziness, almost drunk without being drunk lol
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I’m really sorry you’re going through this. A diagnosis like this can feel overwhelming, especially when everything has changed so quickly and you’re suddenly having to learn about MS and treatment options.
Give yourself time to process it. You don’t need to understand everything or make sense of your whole future today. Starting a DMT can feel scary, but your MS team can explain the options, benefits, and possible side effects so you can make decisions with more confidence.
Be kind to yourself during this adjustment. Connecting with others who understand what you’re experiencing can also make things feel a little less lonely. Wishing you strength as you take things one step at a time.
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hello, @mythh64 . I’m so sorry to hear this. I’m a little older than you - 32 - and was diagnosed last december following a nasty relapse in '24. it was an enormous shock. I’m still processing it, in many ways.
you’re not alone in this - it is certainly frightening and overwhelming and then the rest. don’t be afraid to reach out, and I’m glad you’ve done so here - there are some great people with useful and comforting things to offer. I’d vouch for everything they’ve said and offer what has helped me: good sleep, good diet, good exercise, within your limits. mindfulness has helped, as has talking to people. equally, be patient with yourself in coming to understand the disease and process your own diagnosis; it will all take a lot of time, as I can attest.
try to balance fear and realism with some optimism, too. there is so much that can be done to improve quality of life, whether that is DMTs or therapies, and there is so much money and research going into MS, more so than other, similar diseases. if it’s any reassurance, the year following my relapse felt like a daily waking nightmare, but there has been some improvement since. I am still adjusting to the new normal and the new unknown; in my case, it’s a question of learning to manage it.
there are great resources available, but I appreciate even that can be overwhelming. the MS society and MS trust have helplines you can call (MS society have nurses!) who can be a great help
I’m sorry to hear what you’re going through, but you will get through it. happy to discuss privately and share more of my own experiences, symptoms, and what has helped me, if you think that could be of help
take care, and go steady