Neurology referral finally came through!

New diagnosis and before diagnosis
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Hi all, having been referred to neurology in July of last year, following signs of demyelination consistent with MS on an MRI for an unrelated reason, I finally got my appointment through! I’m seeing the neurologist on 20th March.

I was just wondering really, what to expect from my first appointment? I’ve read that it’s unlikely to actually get a formal diagnosis the first time you see a neurologist, so I’m wondering what the outcomes of the appointment might be?

For context: when I was told last year that my MRI showed signs consistent with MS, I didn’t have any active symptoms, other than tinnitus (which I’d had since 2021, that was the reason for the MRI actually). I can think of unexplained symptoms I’d had in the past which, in retrospect, could have been MS-related. I’ve written a log of these with dates, as best as I can remember them, to take to my neuro appointment.

In the last couple of months though, I have started to experience some new symptoms that don’t seem to have another cause. Specifically, I’m getting vertigo (I’ll just be sitting at my desk and it’s like the room shifts around me, very odd!), as well as shooting pains in my ear and jaw which feel similar to descriptions I’ve read of trigeminal neuralgia. I’m keeping a diary of these too.

Obviously I don’t know whether or not I actually have MS or if something is going on, but I am bracing myself to be told I do indeed have MS - it feels like the most likely conclusion! Ideally if this is the case, I’d like to try to get on a DMT as soon as possible, as I understand that this is beneficial for preventing further damage. I don’t know though if it’s likely I’d be able to start a DMT straight away or if I’d need to wait for further tests etc. to confirm diagnosis before I can start that process.

If anyone has any recent experience of first neurology visits/diagnosis, I’d be really keen to hear about this, if anyone is willing to share!

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Hi Woodsie

My initial neuro appt. was quite a few years back, but you should expect a discussion of your medical history, a physical examination to check your balance, reflexes, if you have nystagmus/do your eyes track smoothly, perhaps a pin prick test.

The neuro will probably want another round of MRI(s) to see if there have been any changes from the previous one(s).

They may want evoked potential tests, possibly a lumbar puncture (not all neuros ask for that).

Good luck with your appointment and I hope things move towards a diagnosis one way or another.

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Like TheresaB it was a long time ago for me too. It sounds like you are well prepared, which is good, and beyond that I don’t think there’s much point in trying to overthink it in advance.

The only thing I would suggest you maybe consider is taking someone with you. these are very strange waters and unfamiliar ones, and it can be useful to have another pair of ears to take in what’s being said.

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Nothing from me I’m afraid, it’s 20 years since I was diagnosed. I believe that in order to determine which DMT is the most appropriate the neurologist will need to understand how active your MS is. They do this from MRIs and they usually do one with contrast dye because it can highlight whether a scar is new or not. I suspect that your first meeting with the neurologist, if it is confirmed as MS, Will be coming up with a plan to identify how active your ms is. They’ll do all sorts of pushing and prodding and poking of your limbs, and they’ll want to go through your experiences of what might be relapses, to get an idea of how it’s looking. They may even want to do a lumber puncture. Whatever happens at your first appointment, it can all be a bit overwhelming so I think they deliberately don’t pile on too much. Write down all the questions that you think you might have, because if you are anything like me you’ll walk out of the door and in half an hour remember a whole list of questions wanted to ask! Good luck

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Thanks all for the replies! From what you’ve said @TheresaB it sounds like I’m probably in for more tests, which I was kind of expecting. I am hoping not to need a lumbar puncture as that sounds horrible, but if that’s what’s needed then I guess I’ll cope!

@alison100 thank you for the tip, I’ve asked my partner to come with me. The appointment letter actually said to try to bring someone who knows me well to help with taking a medical history, but I think it’ll be just as important for moral support and to help me take things in! Although his memory is even worse than mine (he has ADHD) so whether either of us will remember most of what is said is an open question… I might ask my partner to take notes so at least we’ve got some kind of record!

@cymroglyn So from what you’ve said, if it is MS then it sounds like I won’t be able to get on a DMT until I’ve had at least another MRI to see how active it is? That’s disappointing, I was hoping I might be able to start on something at least while tests are being carried out. That’ll be a question I can ask the neurologist I guess, if there’s any treatments that could be started sooner.

So a follow-up question from me to the community: what kinds of questions should I be asking at this stage? I’ve started making a list, so far I’ve got:

  • How likely is this to be MS based on my symptoms and MRI, e.g. could the results be explained by any other condition?
  • If it is likely to be MS, how much damage is visible from my MRI?
  • What is my long-term prognosis likely to be?
  • How soon could I start treatment?
  • Is there anything I can do to manage my symptoms in the meantime?

Anything else I’m missing? Thinking back to your own diagnoses, what do you wish you’d asked early on?

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Not really. All the questions that one really wants answered are unanswerable anyway…

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A late reply to your questions. I was diagnosed some 18-19 years ago simply on the basis of an episode of optic neuritis and then an MRI. The neurologist then asked if I had experienced any unusual symptoms prior to MS to which I said yes (facial tingling, and a sort of tingling in one arm and leg) and that was it - no further tests at all and although I can’t remember exactly how long I had to wait it was only a matter of weeks/ maybe couple of months before an ‘Avonex’ came to my house with a supply of injections and showed me how to inject myself ( ‘supervised’ me while i did my first one).

From reading all the posts on the forum I get the impression that practice varies from health board or neurologist to neurologist. My guess, and it is only a guess, is that a lot will depend on what your MRI has revealed ( in my case if was ‘quite a few lesions’ in my brain).

Going through your recent questions:

Damage will show up as ‘lesions’ ( both size and number I gues) which are like ‘scabs’ that form in areas of the brain that have been attacked and injured by the immune system ( sound scary I know but that’s basically what happens).

I’m no medic but I think that it is perhaps impossible to make a long term prognosis . I think it varies enormously from person to person. In my case I was what I think is called a ‘late onset MS) I.e I was in my early 50s which, in general is supposed to be bad news. 18-19 years later I’m still walking (half a Km the other day) and not doing too bad or, as my MS Nurse said in January, I’m doing very well. I am on Avonex - an early and in comparison to the recent drugs , one of the least effective treatments!.

This is a pure guess by me but if he/she does tell you it’s MS then the initial advice from him/her will be along the lines of healthy diet, exercise etc and definitely if you smoke then ‘stop’. You will be given an MS Nurse and he/she is probably better for having discussions about diet, exercise etc and how best to manage MS and its symptoms ( don’t be at all surprised if the neurologist seems a bit rushed ).

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Oops - that should have read ‘before an Avonex nurse came to the house’

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Thanks all for the previous replies on this thread! Neurology appointment was a couple of days ago, so I thought I’d give an update here on how it went, in case this is useful to anyone else.

Appointment got off to a slightly odd start as the neurologist was under the impression from the referral letter he’d been sent that I had already been diagnosed with MS and was there to discuss symptoms! Once we’d cleared that up, he asked about my history of symptoms - I’d put together a detailed timeline in a Google doc so I went through that with him. He then did a very quick physical exam, e.g. testing my reflexes and eye tracking, testing for arm and leg weakness, etc (none of which I have!).

After that, he showed me my MRI images (very cool to see my own brain!), and pointed out the lesions. I don’t have that many, four that were visible from the images he showed me, and two were in areas that he said were unlikely to have caused noticeable symptoms. However he did confirm what I’d already worked out from seeing the radiologist’s report from my MRI, which was that the lesions I have are highly typical of MS and meet the “dissemination in space” criteria for diagnosis. He said that as he wasn’t an MS specialist, he couldn’t actually diagnose me. However he was also very clear that, in his opinion based on the MRI and my symptom history, it’s extremely unlikely that it’s anything other than MS. He also said that, again in his non-specialist opinion, the current symptoms I’m experiencing do sound like an MS relapse - but I would need another MRI to confirm this.

So next steps: he’s ordered another MRI, with contrast, and to include my spine this time as well. He’s also referred me to the MS team, although he didn’t know how long a wait it was likely to be for me to see them. He said it was likely I’d see an MS nurse before I saw a specialist MS neurologist. He also confirmed what I’d learned here, which is that I wouldn’t be able to start on a DMT without another MRI to see how active it is.

So for now, I am still in limboland, but at least a little closer to a diagnosis and potentially starting treatment! I’m hoping the wait for the next MRI won’t be too long: when I was sent for my first one on a referral from EMT, the scan was less than two weeks after my ENT appointment, so fingers crossed it’ll be speedy this time too! I’m not looking forward to what I assume will be a longer time in the MRI, with the contrast dye and needing to scan my spine as well, but I’ll cope I’m sure. I’m also hoping the referral to the specialist MS team is quicker than my neuro referral, which took 7 months! The neurologist said he was putting it through as urgent, but as my initial neuro referral was also urgent and that clearly didn’t speed it up, I’m not too optimistic…

Thank you again to everyone who replied to my original post, and to everyone on the forum. I haven’t posted much but I’ve been lurking for a while, and am finding reading about everyone’s experiences really helpful.

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Thank you for that update. I am sorry that the process of creeping towards an MS dx is being so painfully slow. In a way it’s good that there will be no surprises if/when an MS dx formally happens, but I am sure you would rather be turning your mind to treatment options than facing still more faffing about. Well, at least you’re on the road to some clarity now.

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Oh dear, more hurdles to get over. The joys of Limboland! Hope you’re dealing with it okay though? It feels weird to reach out for help when it’s like this, because you don’t really know what’s going on, how you are supposed to feel, or how to put a label on what is happening. It’s a bit like one shoe has hit the floor and you’re just waiting for the other one to drop.

Hopefully it should be a pretty quick referral to the MS team, because the nurses tend to be really good understanding what you’re going through and what kind of support you’ll need. The consultants are lovely but stretched a lot thinner so their bedside manner isn’t necessarily as supportive. I think getting an appointment for an MRI can be pretty quick these days too, it’s waiting for the scan to be reported on that takes the time. Radiologists are in pretty short supply as well.

I really hope everything goes smoothly and quickly for you. Take care of yourself :slightly_smiling_face:

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