Possible diagnosis from MRI but no symptoms?

New diagnosis and before diagnosis
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Hi everyone, I am a 40 year old woman in the UK. My situation is slightly odd in that I haven’t experienced any symptoms of MS, but was recently referred for an MRI to investigate any possible neurological reason for my tinnitus and slight hearing loss (they were looking to rule out acoustic neuroma, which is a kind of benign brain tumour). Yesterday I had my follow up appointment with the ENT clinic, and was shocked to be told that although my MRI didn’t show any cause for my hearing loss and tinnitus, it did show signs consistent with MS.

This has absolutely knocked me reeling, it wasn’t something I’d even considered as a possibility! It feels really strange to be told I might have this illness when I don’t feel at all unwell. The consultant did a basic set of tests with me (checking my vision, balance, reactions, etc.) and asked questions about any other symptoms I’d had. Everything seemed normal and I answered negative to every symptom he asked about.

The only thing that makes me think it could be MS is that although I don’t have any of the symptoms the consultant asked me about now, I did experience many of them back in 2021 after I had a (relatively) mild case of covid. My symptoms (extreme fatigue, brain fog, muscle weakness, dizziness, headaches) lasted about 8 months after the covid infection. At the time my GP diagnosed me with long covid (though I have since fully recovered). I told this to the consultant yesterday and he said it could be that rather than long covid, I was actually experiencing an MS flare-up. I’ve now been fully recovered from that for more than 2 years and haven’t had any similar symptoms since.

I’m being referred to neurology for follow up tests to confirm the diagnosis, but from what I’ve read so far, it seems like if demyelination (a new word I learned yesterday!) is seen on an MRI, MS is the most likely explanation? I’ve been trying to find similar experiences to mine but so far everything I’ve come across seems to be the opposite: symptoms but nothing showing on an MRI, rather than something showing on an MRI but no symptoms.

Did anyone else have an early experience like this? Is it possible to have MS and not experience any symptoms? If my “long covid” was actually an MS flare-up, is 2+ years a normal time to go without a relapse?

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Crumbs - that’s a shocker for you. I am sorry that this has landed on your plate.

I think someone posted on here recently with rather a similar story. If you do have MS, and I hope you don’t, the good news is that you have found out before it has had a chance to do any obvious damage. The bad news is that it would be very difficult and de-stabilising news for you, obviously. Either way, I hope you got some answers soon.

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Hi there. So sorry to hear about your shock possible diagnosis of MS.

I’m no medic but I think it quite possible to go for years of having MS without knowing it and with no real symptoms. It all depends on which parts of the brain/ central nervous system have been damaged and how badly. I was a hill walker and long ( years) before my diagnosis I suddenly started to experience vertigo. Quite out of the blue I suddenly found that quite innocuous slopes and situations would leave my balance spinning (in other more challenging situations I would be fine). I suspect that was the beginnings of MS as was one episode decades before when after a bad flu I found my right leg wasn’t working as it should. That passed after a couple of weeks and I just forgot about it. Similarly, there were times when I felt weary and tired but I put this down to work .

Much l later and after diagnosis, I had quite bad Covid one spring and it certainly made my MS symptoms much much worse and it took over a year before I stopped feeling so ‘fatigued’.

When I was diagnosed, after a bout of optic neuritis, the MRI showed ‘quite a lot of lesions’. So I would say that yes definitely there can be attacks / episodes of demyelination that don’t produce any noticeable symptoms and thus that you could go for years without any ‘noticeable’ relapse.

I’m sure I also read some where that examination of the brains of people who died in fairly old age, or very old age from causes other than MS reveal lesions that caused no symptoms when the person was living.

. MS and the workings of the brain remain a bit of a mystery

Sorry if the above comes across as a little blunt. As @alison100 says, if in the event your diagnosis is MS then the positive aspect is that it will have been caught early before any noticeable symptoms.

All the best and happy to answer any questions you might have

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I had tinnitus in 2019, one year before my very first major symptom of MS, which was optic neuritis in 2020. I even went for a hearing test because of the tinnitus, and I was told that it was nothing major and not uncommon. I was given a piece of paper to take to my GP about my tinnitus, but I didn’t share it with my GP. I truly thought it was pointless, as the woman who reviewed my hearing said it was not uncommon and could just happen randomly, due to stress, etc. After all, my tinnitus only lasted a few days.

This was a big mistake, as my tinnitus was my one and only symptom of MS in 2019. Then, in 2022, when I had my second relapse with numb hands, I experienced other hearing symptoms too. Not only did I have tinnitus, but I also had hyperacusis, hearing sounds too loudly.

Back in 2019, no lesions appeared in my brain. I had an MRI for migraines, but it was not with contrast. They found nothing back then and blamed hormones for the migraines.

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Thank you, Maria - I knew there was at least one member on here with a similar story to the OP, and you were the person I was thinking of!

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Thank you Maria, that’s so similar to my experience! I started experiencing tinnitus back in 2020 (it was during the first covid lockdown, but before I’d had covid). It came on suddenly, with a migraine. The migraine went away after a day but the tinnitus never did (I still have it now). I went to my GP at the time and similarly was told that tinnitus isn’t uncommon, we don’t really know what causes it but there isn’t a cure, if it was causing me distress she could refer me to ENT for some kind of therapy (I think basically they train you to ignore it?). But as it didn’t seem that bad, just annoying, I just figured I’d live with it. It’s never improved or gone away, but I have got better at ignoring it - it’s pretty loud right now because I’m thinking about it, lol! But most of the time I barely notice it these days.

Then earlier this year, my partner who has recently taken up a hobby of restoring old audio speakers, showed me an app that tests your hearing in a bunch of different ranges. I tried it out of curiosity, and was surprised to see that it showed mild hearing loss at higher pitches. I went back to my GP and this time was referred to ENT for a full hearing assessment. They said the hearing loss was mild, and as it wasn’t affecting my daily life it wasn’t worth at this stage looking into hearing aids. But as I had tinnitus as well, and I don’t have any lifestyle risk factors (e.g. working in a noisy environment) that would explain that kind of hearing loss at my age, they were going to refer me for an MRI to rule out acoustic neuroma.

The ENT consultant I saw on Friday was different from the one who’d initially referred me, and he actually said it was lucky I was referred, as I was borderline for the criteria for referring to MRI and not every consultant would have done so.

I knew as soon as I walked into the consultation room that he had bad news for me. He gave me a really sympathetic smile as I walked in and I just thought, well ok, so I do have brain tumours then! Which I wasn’t too worried about as I already knew that the kinds of tumours they were looking for were benign. When he said MS it felt like the floor dropped out from under me.

I’m hoping I get my referral to neurology through quickly. I really want to know more about what the MRI says. The ENT consultant said he couldn’t tell me all that much as he’s not a neurologist, he gave me some basic information but said neurology would be able to tell me more. I’d like to know exactly what they’ve found - the ENT consultant just said “signs consistent with MS”, which from reading around I now assume means some lesions/demyelination. I’d like to know how many they’ve found - a lot, or just one? As I assume that will indicate how long I might have had MS, how many attacks I may have had, how severe, etc. Unless I’ve totally misunderstood that of course, which is entirely possible!

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Thank you, and no that doesn’t come across as blunt at all. I’ve been doing a lot of reading (through reputable sources!) since getting this shock news on Friday and what you’ve said seems to confirm what I’ve been reading. Obviously I’ll need to wait for my neurology referral to get any extra tests and either get an actual diagnosis or learn that it isn’t MS, but from what I’ve been reading, and reflecting on some prior, minor health issues, it feels to me more likely than not that it is MS.

The reassuring thing has been reading people’s experiences on this forum, it seems like if I do have MS it’s possible it could be years before it starts to have a significant impact on my life. Which was not my understanding of the disease before I got the news on Friday, so I feel a bit less panicky about it now I have a bit more information about it!

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Thank you Alison. I’ve found a few other similar stories in the forum now - apologies, I should have searched for those first before posting! As you say, if I do have MS it is good news to have found out early, from what I’ve been reading it seems like the treatment options are really good from an early diagnosis. I just need to wait now for my neurology referral so I can find out either way!

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You know, even a single lesion in the brain can cause the issue. I only have a single lesion in my brain, that caused both the hearing issues and the optic neuritis. Then, of course, I have 3 more lesions in my spine, causing issues eith the hands. It truly is a lottery, what symptoms you get based on where the lesions are.

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Woodsie, I do agree. Keep cool. It could have been worse, and there are DMTs available to support you at this stage.

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Oh thank you, I didn’t know that but it’s useful to know!

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Hi @woodsie. Yes, a diagnosis of MS doesn’t necessarily mean the end of ‘life as we know it’ (to borrow some words from Star Trek). In my case I was diagnosed in my early 50s (51 or 52 I think). For several years and other then my weekly injection of Avonex, I basically forgot that I had it. Carried on working for 5-6 years until the company issued invitations to apply for a pretty generous voluntary severance package- more or less didn’t make much sense to carry on working! I now can’t remember exactly when but one day I found that after an hour or so of walking my right leg sort of stopped working properly. Now 70 and I can still walk but my right leg struggles after 10-15 minutes and I do find that if I need to pee then I have to get to the toilet quickly! Apart from that I sometimes getting a bit weary / fatigued I’m not too bad ( spent a couple of hours yesterday sawing up an old wooden shed).

Every case is different but the more recent Disease Modifying Drugs are better than the few that were available when I was diagnosed .

I tend to follow the general advice on diet (and Vitamin D) exercise and meditation/ mindfulness ( calming the mind and dealing with any stress that might inflame the immune system).

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Hi,

My experience was a little like yours.

Initially I had no MS symptoms.
Abnormalities were picked up on a brain scan I had following unexplained pains in the back of my head, then other pain and dizziness. It all took a long time (2 years). In the meantime, my original symptoms resolved. Eventually after further scans and a lumbar puncture, I was diagnosed with “radiologically isolated syndrome” i.e. signs of MS but no symptoms. They were intending to monitor me (annual MRI).

Just as that diagnosis came through, I did get my first symptom: fleeting but repeat “paresthesia” (pins and needles). A few months later my diagnosis switched to MS.

I decided to get onto an effective DMT as soon as I could. I also make sure I get plenty of vitamin D.

For what it’s worth, over a year on I still have just this one symptom. For now, I work full time, travel internationally, and am a keen runner and dancer.
In retrospect, I would have wanted to start on a DMT even with RIS. I think I remember reading there was some evidence that early treatment (RIS) could be effective. Also, I think not everyone with RIS goes on to develop MS.

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Thank you Leonora, that’s really helpful to know. I’m hoping I’ll find out more when I get my neurology appointment through about what the MRI actually found, eg whether it’s being considered an RIS or MS. Either way I will definitely ask about DMT, I’ve also seen evidence that starting it early can really help

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I’m definitely in your camp on DMDs. My personal experience (and I’ve done a bit of both) is (i) going for the strongest that is available, as soon as possible is a good strategy and (ii) not being quite fast enough off the mark or firm enough about what you want is a bad strategy!

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Hi everyone, small update from me. I’m still waiting for my neurology referral, but I saw my GP this week and asked to see a copy of my MRI report as I wanted to know a bit more detail than “signs consistent with MS”! He sent me a copy, and the relevant paragraph is:

“There are multiple foci of signal abnormality in the juxtacortical, subcortical, periventricular white matter as well as in the brainstem and cerebellar hemispheres in keeping with demyelinating lesions fulfilling the dissemination in space criteria for multiple sclerosis.”

So, with help from the brilliant pinned post on this forum about terminology and the brain, I think basically this means that I meet one of the McDonald criteria: you need lesions in two out of four specified areas, and I have lesions in three of them (the fourth would be the spinal cord which hasn’t been scanned yet, so who knows - could be all four! :upside_down_face:). The other criteria is dissemination in time, for which it sounds like they’ll probably need to do a lumbar puncture. So I’ve got that to look forward to…

I feel mixed about this. On the one hand, I do feel better having more information. I would rather have bad news than no news, I don’t cope well with uncertainty! But on the other hand, I’d almost convinced myself that the neuro was going to tell me that it was really unlikely to be MS and they were just going to have to monitor me, but this report really makes it seem like MS is the most likely explanation.

Thank you to everyone who replied to my previous post, and to everyone in this community generally. I haven’t been posting but I’ve been lurking and reading through lots of posts here, just trying to get a sense of what this diagnosis might mean for me in future. I’m getting a lot of hope from reading your experiences, the treatment and management of MS seems really good these days so I’m optimistic that this won’t change my life all that much!

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Hi Woodsie. Good that you have some clarification- even if it’s not brilliant news. I’ve never been quite sure how the McDonald criteria are applied. In my case I had an episode of Optic Neuritis as a result of which I had an MRI which revealed ‘quite a few’ lesions. When I then saw the neurologist he asked about any previous strange / unexplained problems/ symptoms. I said that some months before the neuritis I had some strange tingling like feelings in my right arm and down part of my back. I had ignored and dismissed it as simply being some weird thing!

His response was pretty much, oh right well it looks like MS and we will start you on a treatment and that was that! No waiting for further episodes of any symptoms or other tests. I’ve never had a lumbar puncture ( except when I was a little boy and contracted something in East Asia. That was in the days way before the ultra fine needles of today !)

It’s definitely a good idea that when you do see the neurologist you take along a list of any previous ‘weird ‘ and unexplained symptoms and some indication of when these occurred/ how long they lasted.