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MS v Menierres?

Hi

Last year I was diagnosed with radiologically isolated syndrome. My problems at the time were fatigue, chest tightness, and pain/pins & needles in right foot/lower leg.

Brain MRI showed quite a few very small, non-specific lesions, and also one larger lesion typical of demyelination. Second brain MRI later showed possible, but not definite changes. MRI of upper spine was clear (consultant thought it wasn’t necessary to scan lower spine). He felt that the brain lesions, whilst ‘suspicious’ of MS, could just be incidental findings, and not linked to the symptoms I’d reported. He said he though radiologically isolated syndrome was the ‘safest’ diagnosis, but also said there was between 30-70% chance it could turn out to be MS over next 5 years.

I discharged myself from neurology, and neuro said he thought this was a good idea and fully supported it. He said a lot of patients in my situation would ask for follow up scans, and whilst he would do them if I wanted, he thought it wasn’t the best approach from a psychological perspective - his advice was to get on with life as best you can, without focusing too much on the possibility of MS - because if it was MS, it would show through future symptoms, and he’d be happy to reassess me if that happened. Also a mix up of scan results (his error, for which he appologised) had left me quite stressed, so I really needed space from it all.

However, in March this year I developed sudden tinnitus (both ears, left worst), along with dizzyness (not vertigo) and fatigue. Didn’t go to GP straight away, as wanted to see if it was a virus. After a month, I went to GP - who referred me to ENT, and also re-referred to neurology. ENT tests showed mild hearing loss (at 2,3 and 4khz) . Consultant said this could be noise induced, but since that wouldn’t account for the dizzyness, he said he had to be honest with me that he though the diagnosis lay elsewhere, and that he would encourage me to go back to neurology (he sent letter to this effect to my GP). However, I’ve read that although dizzyness is common in MS, hearing loss isn’t terribly common. I think my symptoms could be consistent with menierres disease, and am a bit concerned ENT consultant may have missed it because he got sidetracked by my previous history.

My neurology apt is sept. I presume another mri will be ordered, but last time that took a few months - so likely won’t know anything more till november time.

My worries are:

  1. i don’t notice the hearing loss at all, and I’ve adjusted to the tinnitus really well (always there, but rarely annoys me) - but the dizzyness is horrible. Some days worse than others, and always bad in the mornings when first I wake up. This has been going on since march, and some days I’m struggling.

  2. I still have pins&needles (constantly) in right leg. Neuro said that because spine mri was clear, this couldn’t be MS related. But he only mri’d upper spine (he said he though lower spine was unnecessary). I do occasionally wonder if I should have had full scan of spine. Although new symptoms are dizzyness / tinnitus, (so if MS, it will be brain not spinal involvement) - would it be reasonable to request mri of brain and full spine, as I’ve never had lower spine done and leg symptoms persist?

  3. Also concerned that ENT consultant may have dismissed menierres disease out of hand (when symptoms could fit) due to his (possibly) being overfocused on previous MS investigations. Not sure what (if anything) I can do about that.

Any thoughts / suggestions / ideas greatly welcomed!

xx

Hi,

I’m sure the reassurance you’re looking for is: “You’re right, it’s probably Meniere’s!”

Unfortunately, I can’t give that, and whilst it still might be coincidental, I’d be highly suspicious of a link, given your history.

I think, in any case, returning to Neurology, as you’re already doing, is the best way forward. To my mind: “There’s probably a link” is a more proactive response than: “It’s probably coincidence”.

My bet is you’ll be referred for another MRI, and they should be able to see from that if there have been any changes. It’s much more thorough than assuming it’s unconnected - even if it might be.

Tina

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thanks Tina X

to be honest, it’s not so much that I’m looking for reassurance that it’s not MS…it’s more that I’ve had so many different opinions - from doctors, friends, and family - that I’m completely confuddled in my own head about it all, and I find it hard to recognise what’s likely and what’s not so likely any more.

My first neurologist said ‘no way MS, definitely mental-health related’. Then scan results came through and he said ‘definitely ms or ms-like’. So I told my mam and my husband! Then I was referred to an MS specialist said, no, not definitely MS… lets do another scan. So had to explain to family that it wasn’t ‘definitely’ Ms after all! Then an administrative error meant MS specialist viewed the second scan on 2 different occasions (not realising), and he wrote 2 different reports - one saying there was an additional lesion, another saying there’d been no change. I received both reports, days apart. He called me in to apologise and said there was possibly a new lesion, but possibly not… and nothing to worry about. Husband was there at that appointment - so for ages afterwards, he was fairly sure MS was off the table. After recent issues he says he thinks its now fairly likely. My mam keeps telling me it’s a virus / the weather / stress … think she’s trying to reassure me, rather than be dismissive.

Bottom line is that the whole situation has flip-flopped so many times that I genuinely feel I’ve lost perspective on it all. I feel like I just come to terms with one opinion, then it changes and I have to readjust all over again. Which I’ve found really hard. So now I don’t feel that I can safely view anything as a ‘probability’, because the rug has been whipped from under my feet so many times, and there are just lots of confusing possibilities.

Anyway. Like I said, I’m sure lots of people here can relate. But thanks for letting me get all that off my chest! It’s been quite therapeutic :slight_smile:

Well, I don’t mind being used as a sounding board - glad you’re feeling a bit better for letting it out.

You certainly have been messed about - particularly with the neuro writing two conflicting reports about (unknown to him) the same scan.

Pretty embarrassing for him, I should think, as well as confusing and unsettling for you. But it just goes to show there’s a large subjective element in interpreting scans, and even the same person, looking at the same scan on different days, might not reach the same conclusions.

I wonder how much the kind of day they’re having influences the interpretation? If they’re feeling pretty upbeat, are they more likely to say: “Oh, I shouldn’t think that’s anything to worry about”, but the opposite if they’re having a really bad day?

I don’t think I’ve ever heard of anyone else having the same scan interpreted two different ways by the same person, but it is common for the evidence to stay quite ambiguous for some time, and be open to different interpretations, before a confident diagnosis can be reached.

There’s no way any kind of mental health issue can cause lesions, so I think we can rule that one out, at least. But many people with MS have earlier been diagnosed with depression, anxiety, or other mental health issues. The situation is not helped by the fact these conditions are possible symptoms (rates of depression and anxiety are much higher in the MS population than at large), so it can happen that a symptom - albeit correctly diagnosed - is wrongly assumed to be the root cause - which halts the search for further evidence. At least you did have a scan, which blew the “mental health” theory out of the water.

I hope you get answers soon - it’s not popularly referred to as “limbo” for nothing - but I will say your neuro was dead right - IF it’s MS, it will eventually show itself, both through symptoms and on scans. It’s not something that lies undiscovered forever, even though it can take a long time to nail it.

Tina

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