Neurology appointment - what should i expect?

Hi everyone,

I’ve got my first neurology appointment this week and just wondered what to expect?

My GP referred me due to the numbness that I’ve been getting in one foot, plus difficulty lifting the toes in that foot, and all sorts of other random symptoms like weird sensations on the skin, tiredness (used to be a keen runner - can only dream of that now!) and a few other bits and bobs. Presumably they could also be symptoms of lots of other things as well as MS!

Does the neurologist refer you for more tests? Or do any tests on the day? Thanks

This might help. How is MS diagnosed? | MS Trust

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In my experience, the neurologist will take a history, may examine you and may order further tests like an MRI scan. If you think it might be MS, then get it off your chest and ask. That what I did. You won’t get a definitive answer and may get a dismissive one, But at least they then know that it won’t be a bolt from the blue for you if that is what it turns out to be. Which I hope it isn’t, obviously.

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Hello @LucyB1
I was a keen jogger once upon a time; alas 4am wake up and run b4 work is behind me now.
You’ll probably get a neuro evaluation and possibly a MRI and lumber puncture in due course.
Keep an open mind at your neurology appt, hopefully it’s not MS and if it is, it’s not the end the World --it’s just a more challenging World imho.
Regards,
JP

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I am not familiar with the British way of diagnosis and such so beyond my own personal experience I can only speak fairly generally I imagine, sorry about that.

There are a few basic things my neurologist often does at least. Like, he checks for muscle weakness, balance and asks about stamina. He has me walk back and forth on a line on the ground for example, with open and closed eyes.
He asks me to push a certain bodypart in a certain direction and then pushes against it to check how much strength I can put in. For example he might tell me to lift my knee while sitting down, or tell me to spread my fingers while he then pinches them together.
Then in general I would expect, but at least in my case, the bread and butter check is an MRI. A scan using magnetism and thus not using radiation. If he sees wounds in your brain or spine, he might do another one with a contrast agent to see if you have blood activity in there as well. That’d then be an indicator of an MS attack, which would be basically the number one most common MS related issue with things like tingly, prickly, numbness feeling in various parts of your body. Usually you would then probably go straight on a prenidsone steroids treatment to smash your immune system urgently and thus stop the attack for the time being. That might then stop or at least reduce those symptoms depending on how long they went untreated.
You might also have a spine fluid check. They’ll have you lie down on your side and bend your body as if you’re making a circle. Then the parts of the spine open up a little bit so they can relatively safely insert a syringe and extract fluid, which they can check for how T cells, virus, etc.
That’d be the extent of my personal checks at least.
I had similar symptoms to you I think but they started in my fingers and then moved down to the toes over time, at which point I was already doing IV steroids, and that made me return to normal more or less up through my foot, leg, chest and shoulder. My fingers still have a tingly prickly feeling and slightly lower sensation as well as feeling randomly itchy even though they aren’t itchy, so to speak.
Other stuff has happened since then, but at that point at least basically for MS getting as quick as possible a proper diagnosis and then prompt steroid treatment showed the way to avoiding too many consequences.
Your checks and whatnot leading to something else than MS would then quite contrary make those steroids even potentially dangerous so I’m pretty sure they’ll run anything they can to show clearly if it is this or that, and then head into MS if they cannot find any other reasons. It often seems to be a case of rule out everything else, okay then it’s MS.
I said this in another thread as well but compared to the various fancy names for infections or syndromes, MS just means “you have a bunch of wounds in your brain”, be they there for whatever reason or in whatever shape and form. It is also quite different from person to person. So while you can check the flu virus to say you have flu or not, MS is a little more complicated and while it is good to mentally prepare for it you might be waiting quite a while until you arrive at an MS diagnosis in the UK as far as I have heard. It took me two weeks of being actually hospitalised in Japan, but I don’t imagine you’ll be doing back to back tests several days in a row in the UK, so you could be juggled around in the system for a little while. Getting that steroid treatment as fast as possible really makes a huge difference in how bad the symptoms manage to get, so if you can make a difference in the speed of treatment from your own side somehow I definitely recommend it, and it might also be good to show your drive and enthusiasm (well, bad word for it I guess!) for getting that bloody diagnosis as fast as they can properly get it for you, regardless of what you might have to do.
The first step then I guess would be to get that MRI done as fast as possible, so I guess that might be where you can start, depending on what your neurologist says at the first meeting. Hopefully you won’t have to spend too long just talking about it. I do notice at least in Denmark that they put a lot more focus into giving you soothing treatment for the stuff in your body that’s ruined, like rehabilitation stuff, rather than quickly get you bam smash medicine that’ll actually slow down or stop the roasting of your brain. I am not sure if the UK is quite that bad, but just in case you might need to be a little insistent in moving forwards with actual preventive and reactive stuff rather than say setting you up for horseback riding so you can do muscle training even if you cannot walk. Surely better to just stop the attack that’s taking away your legs I imagine, but also needs more money and more intense care, which I can easily imagine being difficult in public health care where there are 10 million people in line right behind you and right in front of you for everything.

Well I probably painted a terrifying image of doom and gloom, sorry about that, bottom line there’s a lot of stuff that could be the reason as you say, and MS, no matter how likely it is, needs a lot of other stuff ruled out first partly due to very very different necessary treatment. But really if it IS MS, you can preserve your physical welfare and quality of life quite well with swift and proper treatment and medicine for quite a long time unless you are quite unlucky, it seems.
So don’t despair, you’ll be alright! Just make sure to remember that the diagnosis is your friend, no matter what it is. Not knowing what’s wrong doesn’t fix it, but knowing it well means you can do something about it. The better and the faster you can get a good view of what is wrong with you the better, so jump into it, don’t shy away or slip into depressed denial as tempting as it might be, because it might just make it even worse. Swiftly acquire a bomb and blast that illness whatever it is in whatever way seems to work best. You can really do a lot of good with focused swift treatment. I wouldn’t be able to walk today if I had had to wait 3 months for an MRI for example.
I wish you best of luck with that first appointment, hope everything goes well!
And sorry for writing endless walls of text!

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Thanks everyone for the answers - so useful. Not feeling too worried at this stage (though nervous about MRI - I have serious claustrophobia!). It’s been so helpful to hear other people’s experiences x

Most of us on here are MRI veterans. For me, the trick is to shut my eyes as soon as I lie down on the
trolley and keep them firmly shut throughout whatever happens next. ‘Nothing to see here’ is my MRI motto. There are plenty of interesting noises and they are part of the package but are fine as long as you know to expect them, but there is no need to see anything whatsoever.

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alison100 I do exactly the same as you and my eyes do not open until they come and get me

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I struggled with MRI a little at first too, but now it’s just been so many times that I basically fall asleep. I also have a little claustrophobia, but it’s been like 20 times at this point so I have if anything gotten more comfortable in that little tube than e.g. when I go for blood tests. It sure is noisy though, blasts my ear drums.
But yes I also hear that closing your eyes firmly and pretending it doesn’t exist can help a lot. Personally I try to focus on and see if I know the sounds. “Ahh, now they are scanning that part again…” kind of thing. I’m terrible with multitasking so it helps me forget the rest of the world.

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Its a likelihood they will book you in for a few MRI scans after a talk and with a check over to check your foot, sight, balance etc. They may also want you to have a lumber puncture which they will book you in for too.

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Thanks all - had the appointment today, and doc suggested MRI, some test to do with my spine and some nerve testing too. I’m pleased they’re being thorough and hopefully it’ll provide some answers!

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Yeah the test on your spine is the lumbar puncture was able to avoid it myself as the mri showed significant scaring/lesions on the back of my brain and on my spinal cord. Hopefully you will get down to the bottom of what it is soon MS or other.

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