Hi, first neuro appt today, MRI next week

New diagnosis and before diagnosis
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Just wanted to say Hi,

I’ve been lurking around here for a few weeks since my GP referred me to Neurology for suspected MS and as I had my first Neuro consultation today I thought I’d post about my situation in case it helps others in a similar position.

My GP originally referred me through the NHS but the wait to see anyone was “at least 3 months and getting worse” according to the Neuro department secretary at my local hospital so I used my employee health insurance to go private and got an appointment within 24 hours! This afternoon Dr [removed by miderator] (who is also an NHS consultant!) went through all my history that I that noted down and time-lined (thank you for the posts/comments about this!) , he’s requested an MRI scan for me next Tuesday and a follow up with him for the result the following Weds.

This is a brief history of my symptoms that may or may not be significant but are unexplained at present:

  • 2011 - 3/4 months of muscle pain and weakness in both legs, walking up and down stairs was really hard (heavy, weak feeling) and I fell down the stairs when my legs didn’t keep moving (not sure that makes sense, sorry).

  • 2015 - Extreme fatigue and back pain, diagnosed as Vit D deficient.

  • Early 2017 - 2 months of extreme fatigue despite constant prescription of Vit D but with occasional night sweats - this was put down to a side effect of my Citalopram that I take for depression and anxiety)

  • Dec 2017 - One off double vision that lasted no more than 2 days - went away and I put this down to tired eyes

  • 5th May 2018 - Tingling sensation in fingers and 2 toes, and a weird buzzing sensation down my middle when i look down (not an electric shock sensation that I understand to be Lhermitte’s sign but more of a strong tingling that lasts seconds but happens every time I look down)

  • 17th May - Referral for Neurology consultation, 30th May private consultation.

Sorry for the long post, I know that nobody here can diagnose me and that some or all of the above may not be MS so just looking to share my situation and if any of you have any advice for this waiting for ests/results phase I am all ears :slight_smile:

Chaz

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Hi Chaz

You’ve been very sensible in your approach to your neurology investigations. Having your history and symptoms written down with timelines makes life easier for you to get the most from your neurology appointment and their job easier too.

It’s also a very good thing that the Consultant you saw also has an NHS practice. That way, if necessary you can be referred back to the NHS.

In terms of how to cope while waiting for results, it’s difficult to say really. Try not to worry too much. (Easy to say, hard to do!) Whatever the results, worrying won’t change them. Supposing it turns out to be MS, then there are at least effective disease modifying drugs nowadays, so you might find yourself back to normal and just getting on with life, pretty much symptom free. And if it’s not MS, again, you could find that you are back to your everyday life thinking ‘phew, I’m glad that’s over!’ And if it’s something else, then again, you’ll just learn how to deal with it.

At least in a couple of weeks you’ll know.

Best of luck. Good luck with the MRI scan, if you’ve not had one before, don’t panic about it, they’re noisy, go on for too long and meanwhile you’re laying there trying not to move, with your head caged like you’re a Stormtrooper. Personally I find them quite hypnotic and have often fallen asleep in them!

Sue

1 Like
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Thanks for the reply Sue,

I’ve had an MRI on my lower spine before but nobody warned me how loud they are - it really took me off guard. I can’t imagine ever being able to sleep through it lol. I am not looking forward to the head cage thing but thanks for the warning.

My symptoms seem to be getting worse, the weird buzzing down my middle when I look down is now going further to my arm and legs and is much more intense. It reminds me too often that something’s wrong but I am trying to stay positive.

Chaz

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So I’ve just got home from my MRI, it was really uncomfortable but the radiologist said I did really well staying still. It took 40 mins & gave me a horrible headache but hopefully it’s clear enough for them to definitively rule in or out MS. I’m getting quite down waiting now but only one more week to go. Can anyone tell me if they have to do a lumbar puncture if the MRI shows lesions? I’m quite nervous about LP but will obviously have it if it’s necessary.

thanks, Chaz

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Hi Chaz, I don’t know if you’ve had any other tests done but the full battery includes lumber puncture, blood tests, evoked potential (staring at a flickering chessboard pattern), nerve conduction and the MRI which you had today. There’s no way of knowing what is next as each test is usually evaluated by the neurologist before deciding on the next step. Stay on the forum because people will know what you are going through and can offer what support we can. Best wishes, Anthony

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Thanks Anthony, I’ve just had a lot of blood tests (all have ruled out other things) and the MRI today, will see what the Neurologist says next Weds. I didn’t really ask him anything about future tests as I didn’t realize there are a whole battery as you say :slight_smile: I am the most impatient person I know so this is all so frustrating! Shame there isn’t an MS blood test that tells you either way! Chaz

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Hi chaz, I had all the tests mentioned by Antony. Which only lead to being told ‘probable’ ms. It was only after a blood test to rule out (can’t remember it’s name but after looking it up on line even scareyer than ms !) that I was diagnosed. During that time I had a number of letters saying results of ‘x’ test was consistent with ms. I seemed to receive a copy of all letters which are sent to my gp

my advice for your appointment, would be to be real about how you feel about waiting, getting answers, also, if you are told you need further tests ask how long it will be till you have them, how long till the tests results will take to get to the Neorologist and how long till you get a follow up appointment. Sitting back and being a ‘good’ patient can be a very slow road.

good luck, hope you manage to distract yourself over the next week.