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What questions should I ask my neuro?

Hi, this is my first post… 18 months ago I had numbness around the nose, night sweats and terrible tiredness. I had a brain MRI that showed multiple white foci. I was told it was nothing to worry about but I may want a later scan… I did not follow up on this as I felt fine. 3 months ago I had electrical buzzing around my mouth bilaterally, which then settled leaving the most awful mouth pain, I had another MRI which showed inflammation and lesions, one of which was close to my trigeminal nerve. I was diagnosed with TN. I had a LP and spine MRI which were both clear 2 weeks ago which was excellent news, but last week I had the vibrating buzzing in my mouth again, I felt flu like without the temperature, my legs went all wobbly and felt heavy to lift with a creepy sensation. In short, I now can’t walk properly, say 10 metres, then I need to use crutches. I had a panic and got a return neuro appointment. He said I’d been reading to much on MS and it was psychological! I refute this! I then had evoked potentials done on ears, eyes, legs, arms. To no surprise to me the nerves in my legs showed a slowed response suggesting mild inflammation. The other tests were clear. The neuro emailed and said we need to wait and see still before any diagnosis. I see him on Tuesday. Can anyone recommend what questions I should be asking? Something is clearly wrong and I want to make sure I use my precious time with him wisely. Thank you! X

hi fiona

ask the neuro just how bad it will have to get because it is REAL to you, bollocks to psychological (don’t say that bit).

if you are using crutches you are obviously physically disabled and will want to stop this getting worse.

ask if there is any chance of starting on a DMD but don’t get your hopes up.

ask for an ms nurse so that there is someone to tell about any new symptoms.

now the difficult bit - stay calm and collected because you don’t want any more psychological cr*p.

if you have a trusted friend take this person with you to prompt you and to make notes of what the neuro says.

the very best of luck to you.

carole x

Here here, what carol says, if you have pain you have pain, not because I wrote it on here the man is a tool.

Hi Fionar

To begin with, focussing your appointment on MS isn’t likely to be very useful because doctors of all stamps prefer to do the diagnosing and hate it when we ask questions that are about likening our symptoms to specific diagnoses.

Instead, perhaps you could write yourself a list of all the symptoms you have experienced, which appear to be connected. List the dates when things happened and include whether they disappeared entirely (and how long that took) or whether there has been any longer lasting effects.

Then list all the tests you’ve had and what you’ve been told about the results of these tests.

You should perhaps be asking him to explain, if he can, what has been meant by the white spots, inflammation and lesions you’ve been told about, also the results from your evoked potentials test.

Has your neurologist done a full neurological exam? And assuming he has, what does he find? (By the way, is he an MS specialist?)

Has he actually come right out and said your symptoms are psychological? If so, is he referring you to someone who can help?

Or does he mean that you have Functional Neurological Disorder (FND)? Which some people seem to think has a psychological element to it. See https://fndhope.org/

It certainly sounds like you have real symptoms which deserve a real response from the neurologist. If he really does not believe that your symptoms have no neurological cause, has he written this in a report to your GP? Perhaps that’s a question you could be asking him if he seems to still be dismissive of your symptoms, ie what will he be writing to your GP? (A copy of which would normally be sent to you.)

Its quite difficult to think of other things you could be asking. The most important thing really is what do the test results show (including a physical neurological exam)? And what could be causing these symptoms and test results?

Sue

Thank you all. And Sssue - that is a great idea to do a list of timings and symptoms. For clarity, he is an MS neuro, and he said psychological before he got the leg evoked tests back and has now conceeded that this inflammation is probably causing my leg symptoms. He said wait and see, and rest. I’ve been signed of work for 2 weeks.

Thank you Anonymous, incredibly helpful!

Let us know what happens on Tuesday Fionar.

Sue

Hi, firstly can I say this guidance was very helpful as I went in far better prepared than previously today. I had a very rounded conversation and we went through both mris, my recent years medical history, the evoked tests and talked about next steps. MS is still inconclusive, but he did say probable (there was now no suggestion of psychosomatic). I have been given steroids to help with my legs and he has upped my pregbalin for my mouth. He also said my TN was not ‘usual’ as it is inflammation driven so this should settle which was a relief as its been bad for 9 weeks now. Your support was invaluable, thank you.