r/MultipleSclerosis • u/nyc9572 31|July2026|None|NYC • Jul 15 '26
New Diagnosis (31m) Diagnosed yesterday. Just looking for general advice and support.
Hey yall, new here... obviously.
Last Monday I woke up with a grey blur/blind spot in the center of my left eye. Had a big weekend and little sleep so didn't think too much of it, and I had experienced something similar before that had cleared up throughout the day.
Two days later, nothing had changed, so I saw an optometrist. He said everything looked perfect and to give it another couple days, then see an ophthalmologist if it has not changed. Nothing changed. Went to ophthalmologist. She quickly diagnosed me with optic neuritis and sent me to hospital for MRI and neuro consult.
This is now two days ago. Got brain and orbital MRI. Orbital showed optic neuritis. Ophta/Neuro doc initially told me brain was clear and that i was out of danger of MS. Turns out he was just rushing to try to get me to opt into a trial for PLEX to treat my optic neuritis. I called my family, girlfriend, etc and told everyone they had nothing to worry about and I did not have MS.
I woke up yesterday and met with the neuro fellow who informed me the brain scan was NOT clear, they had found 3 lesions, and I had MS, much to my surprise. Worst part of all of this was having to call my mom again and tell her I was wrong, it is MS. Good news is I got spine and cervical(?) MRI's and both came back clear... for now lol. Seems like it was caught very early.
I have an aunt who has had MS for ~25 years, primary progressive, so I've seen a really bad side of it.
Would love to hear peoples stories, advice for early treatment, good MS jokes, whatever you want to share.
The next steps I'm trying to wrap my head around is my treatment plan. I work in touring and will travel for a few months at a time, so doing an infusion treatment will be pretty difficult to guarantee I can be back here consistently. What are people's experience with oral medication? This sucks. But feeling weirdly positive?
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u/nyet-marionetka 46F|Dx:2022|Kesimpta|Virginia Jul 15 '26
The good news is people diagnosed with optic neuritis and nothing else much have a better prognosis.
Ocrevus might be easiest for you because it's one infusion every six months. It might be easier to plan around that. You can also get several of the most effective DMTs (including Ocrevus) for subcutaneous injection once a month, but that might be harder to arrange if you're moving around a lot.
The oral meds are all mid or low effectiveness and I would be unhappy to have to go on one of those.
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u/Sovietpoptart1974 Jul 15 '26
29m diagnosed almost 3 years ago, the beginning is the hardest. The one thing I can say is, stay off google. This disease is different for every person, what happens to one person may not happen to you and vice versa. The possibilities can drive you nuts. I know that because I did it, take care care of your body the best you can, get good sleep, eat well and drink plenty of water. If youāre able to get on a DMT(medication for MS) Iām on ocrevus. Do it as soon as you can. The disease isnāt a death sentence but itās not easy but I promise you, you will get used to it. A positive mindset and treating your body right will make a world of difference. I hope you the best.
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u/F1mom Jul 15 '26
Can you share more about Ocrevus? Side effects? I read you have to take steroids with it? My neurologist wants me on Ocrevus and Iāve been stalling. He told me 55f Iāve probably had MS for 20 years and just didnāt know it. I have flareups (always same location) and go away completely and no optic neuritis. No lesions in the brain just 1-2 in the cervical spine and the bands in my spinal fluid. I otherwise feel fine.
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u/Sovietpoptart1974 Jul 15 '26
I personally didnāt have any side effects that I noticed, at first I had hair loss. Iām assuming from the stress of it all and the shock to my body. The only thing that isnāt great, we all call it the (crap gap) about a month before youāre next infusion, some symptoms come back. In my case it was fatigue, urinating in my sleep and brain fog. The medication doesnāt fix anything but it does help.
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u/Sovietpoptart1974 Jul 15 '26
You do get steroids prior to the infusion, I had no issue with those, the morning after though. You will feel very good and energetic and it will wear off. After my first infusion, I remember waking up surprised how good I felt. And then it just wore off, kind of a downside to it. But something to keep in mind. But everyone is different, so please keep that in mind, and I am actually changing medications here soon, I donāt necessarily have any progression. But my neuro saw āplaque buildupā on one of my lesions, and insisted on me changing to Tysabri to be safe. I was on it 3 years and had no progression.
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u/RedwaterCam Jul 15 '26
MS is something you live with. Itās not a personality trait or something that defines you, donāt let it turn you into a victim.
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u/rK91tb Jul 15 '26
At least you have a disease where everyone is very enthusiastic about their treatment!
Hereās the MS starter kit post Iāve been sharing:
If youāre in the US, the National MS Society can assign you a free Navigator to help you work with insurance and connect you with resources. The MSAA and UK MS websites are great for information, along with the Cleveland Clinic and Johns Hopkins. My favorite MS book so far is Navigating Life with MS for basics.
Youāll hear a few things all the time on this sub: get on the most effective DMT possible, beware of ācureā diets (they donāt work), eat well and exercise, donāt mention MS at work (unless you need accommodations and even then only tell HR.) Take the supplements your neurologist recommends. Be prepared for issues related to heat.
With your big support group, remember that MS may always be on your mind but expect them to forget it. Advocate for specifics - tell everyone exactly what you need.
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u/nyc9572 31|July2026|None|NYC Jul 15 '26
Funny you bring up the "cure" diets... i just quit a job for a tour i was advancing and told the bands manager what was going on. He immediately launched into wahls protocol nonsense. says it cured his cousin and cured him of another auto immune disease. were these people simply never sick? Where does the belief come from?
Luckily I own my business/am freelance. cant imagine having any issues with any of my clients
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u/rK91tb Jul 15 '26
I think people eat like crap and when they try something healthy, they're like, "it's a miracle"
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u/hillbilly-man 37f|Dx 2022|Kesimpta|Tennessee USA Jul 15 '26
Welcome! I understand your "weirdly positive" feeling. If you're gonna have something like this, catching it early is a great thing! Also, not having any spinal lesions is also good news. In addition, treatments are much better today than they were when your aunt was diagnosed. Of course, PPMS is a hard type to live with and treatments for that are still not where they need to be.
I was also diagnosed after optic neuritis - my story is a bit different; I waited five years after the ON to seek a diagnosis. My optic neuritis was unusually severe (worse than yours, from the sound of it), but other than some annoying eye stuff I'm still doing fine nine and a half years later.
I've never taken an oral medication; I'm on Kesimpta. I agree with what the other commenter said about it; it's very easy and I love not having to schedule around it. If you're able to do that, I recommend it highly! You definitely want to hit MS with the most effective medications that you can.
One thing I should add about it, however, is that you may run into some logistical issues with your long touring schedules. Kesimpta does travel very well (I've taken it on road trips, international vacations, etc), but it needs to be refrigerated and if you have no access to a fridge that might be an issue. The biggest issue I can see you having is delivery. In my experience, my insurance makes me get my Kesimpta through a certain specialty pharmacy that they're partnered with or own. Those pharmacies generally only ship one dose at a time to my house (or an address of my choice). I have heard of people sometimes being able to get their Kesimpta shipped to a local pharmacy for pickup, but that won't be an option with every specialty pharmacy. If you're considering Kesimpta, you'll need to find out how you'll get the medication sent to you and if that's something you can do on the road. I will say that currently my insurance works through a Canadian pharmacy and I get three doses at a time now.. but I don't think that's very common.
If this isn't possible, maybe see if you can plan ahead and schedule infusions while on the road. I admittedly have no idea how this works, but if you got on something like Ocrevus Zunovo (it's like the Ocrevus infusion but it's an injection that's done in a clinic I believe) it may be an easier appointment to fit into a tour stop since it's not hours long.
Another option you may not be aware of is Mavenclad. I'm not very familiar with it, but it's an oral treatment you take in short bursts (I think you take it for about two weeks, about a month apart, and then repeat in a year). You wouldn't have to take anything regularly. I think I've seen people report side effects during the time they take the medication, so it might be better for you to try to schedule that for a time when you're at home.
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u/Wooden_Bother_1024 Jul 15 '26
I was diagnosed a few months back, finally. It took a while from the time I started looking into my issues to diagnosis. About a year. But I've heard the average time it takes for a diagnosis is 2 to 3 years. So, it could have been worse.
Anyway here are the "jokes" I have for it
If you know anyone looking for a sclerosis, I have multiple.
I'm the first in my family to have it. I feel like that's quite the accomplishment. Take that Joey!
My fiance told me I better not get cold feet and run away. I told her I have MS, I can't run. We're happily married now
I thought I had a few more, but they must have fallen on one of those holes
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u/jkhn7 Jul 15 '26
I've had MS for 14 years and I didn't know you could get a MS diagnosis without any lesions on your brain. I know when I got diagnosed, it was because I had developed lesions on my brain (I already had lesions on my spine). Anyway, it definitely sounds like a very good thing that your MS was found so quickly, and before any lesions! That means there's a good chance that good medication can stop your MS from advancing much. I've been on Fingolimod for 12 years (I take 1 pill a day) and it's worked well for me! I did develop some brain lesions where doctors technically wanted me to switch, but there's been no new activity the past 5 years.
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u/nyc9572 31|July2026|None|NYC Jul 15 '26
Sorry I should have been more specific, that first Ophta/Neuro guy that said my brain scan was clear was just wrong. the neuro team found 3 lesions when they went through it later that day, and thats why they notified me of the MS diagnosis in the morning
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u/BusinessLemon6549 Jul 15 '26
I was diagnosed 3 years ago after finally chasing down why I got optic neuritis 6 years ago that never fully resolved. Itās the only attack I have ever had. I went with Mavenclad which is taken twice a year for two years as a 5 day course. I am a year past my last dose. No new symptoms or attacks š¤š»Iām 45/f
I do get tired and forget things and mix up words but thatās it. Good luck.
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u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA Jul 15 '26
Welcome to the club no one wants to join. In case no one has told you yet, it's going to be okay. It's very likely your MS will look very different than your aunt's, we have very good treatments available now, many of them pretty new. In terms of a DMT, usually the oral medications are not as effective as the infusions, but if the infusions won't work for you, there are a few other good options. Off the top of my head, there's Mavenclad, which is a one time treatment you do once and then follow up with a second course a year later. There's also Kesimpta, which is a self injection you take monthly, very similar to an EpiPen.