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Original poster

Referred to neurology

43 replies

Ralphsroom24 · 08/02/2024 19:36

sorry if this post is long! I’m not great at being succinct.
I have been referred to neurology for reasons I don’t quite understand, and it’s quite hard to describe the circumstances as they are quite strange. But will try.
I have been experiencing an unusual symptom on waking… which I can only explain as the feeling of the world shaking as I close my eyes. This only happens in the morning and only happens at the moment I close my eyes. It’s hard to explain as my eyes are shut, so it’s not my vision shaking but a feeling of shaking at the moment my eyes close for only a couple of seconds.
also as I am falling asleep my hand is shaking… I only know this after my son told me because my phone was falling out of my hand every evening.
other than this I feel fine, apart from a month ago having visual symptoms (visual loss in one eye and flashing) which were suspected to be a stroke. was referred to the stroke unit by opthamology. An mri showed no stroke. The mri report did however mention that there were multiple signal changes in both sides of my frontal cortex, in excess of what would be expected for age.
Other than this I feel absolutely fine apart from some weird goosebump feelings which are probably nothing.

I am worrying a bit because my father died due to a brain tumour (gliblastoma) but this would have shown up on the mri I imagine?

Why have I been referred to neurology though? I’ve also had bloods for inflammatory markers (crp or something like that). The results will be available in a week. But again I can’t imagine the bloods showing anything that wouldn’t show on an mri.

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 20:46

reflecting2023 · 08/02/2024 20:39

I mean I guess it's for unexplained symptoms so that they can check you over and look at the scans.

The referring DR to neurology is the GP. I originally had vision loss and flashing lights at work (only lasted 20-30 mins) so saw an optician who sent me to the GP, who then sent me to opthamolgy, who then sent me to the stroke team. I hadn’t mentioned the eye shaking thing to them as I didn’t think it was relevant. The GP asked me, who I told, who then has sent me to neurology and asked for bloods.

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 20:47

Tilllly · 08/02/2024 20:44

I've had gamma knife surgery today for 7 brain tumours (little fuckers I call them). The biggest was 0.4mm, the smallest less than 1mm, seen on the MRI
The MRI wouldn't miss anything, really

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That is really reassuring to hear. I hope your surgery was successful 😊

OP posts:
Toddlerteaplease · 08/02/2024 20:49

Oh I get that, but not sure how to describe it. It's really weird. It feels like the bed is shaking. But it's not. I've got MS. I wonder if it's a symptom.

Original poster
Ralphsroom24 · 08/02/2024 20:49

I didn’t mention any other symptoms to the optician or stroke team as they seemed unrelated.
I just saw them for the vision problem at work.

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 20:50

Toddlerteaplease · 08/02/2024 20:49

Oh I get that, but not sure how to describe it. It's really weird. It feels like the bed is shaking. But it's not. I've got MS. I wonder if it's a symptom.

That is exactly how it feels with me! Like the bed, or the world is shaking! But only for a few seconds and only when I close my eyes and only in the morning! It’s so weird and hard to describe! My vision isn’t shaking, because my eyes are shut!

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 20:52

Ralphsroom24 · 08/02/2024 20:50

That is exactly how it feels with me! Like the bed, or the world is shaking! But only for a few seconds and only when I close my eyes and only in the morning! It’s so weird and hard to describe! My vision isn’t shaking, because my eyes are shut!

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Would ms cause high grade signal changes in the frontal lobes I wonder?

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Toddlerteaplease · 08/02/2024 20:55

I thought it was just my imagination, I'm glad someone else has experienced it. Not going mad!

PeggySooo · 08/02/2024 20:55

My son has epilepsy and this was my very first thought upon reading your post. Have you considered it?

Original poster
Ralphsroom24 · 08/02/2024 21:01

I also keep getting weird goosebump feelings (for the last year) that are like a weird cold feeling that creeps up the body. But obvs I couldn’t go to the GP with that because they’d just tell me to put a jumper on if it was cold.
quite a pleasant feeling actually but also kind of strange.
it’s probably nothing to be honest. It might all just be migraine maybe?

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 21:03

PeggySooo · 08/02/2024 20:55

My son has epilepsy and this was my very first thought upon reading your post. Have you considered it?

thats interesting as my son has epilepsy. Only diagnosed after years of being told it was confusional migraines.
could epilepsy present this way?

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 21:04

I’ve had no actual seizures

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 21:07

We hadn’t witnessed the seizures with my son. They all happened overnight and he woke up confused and not remembering who he was etc

OP posts:
Original poster
Ralphsroom24 · 08/02/2024 21:10

He seems to have grown out of them now anyway|
also not sure whether that would show up on an mri.

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Original poster
Ralphsroom24 · 08/02/2024 21:27

I was put on lamotrigine and pregabalin a few years ago until they decided I didn’t need them when i diagnosed with autism and it was decided I didn’t have bipolar after all.
I stopped lamotrigine and pregab last year which is interesting as they are anti epileptics.

OP posts:
PeggySooo · 10/02/2024 18:25

Ralphsroom24 · 08/02/2024 21:27

I was put on lamotrigine and pregabalin a few years ago until they decided I didn’t need them when i diagnosed with autism and it was decided I didn’t have bipolar after all.
I stopped lamotrigine and pregab last year which is interesting as they are anti epileptics.

Yes this is interesting. My son was on lamotrigine.

Epilepsy wouldn't show on an mri, it would only show if there was a structural problem that could be causing it, e.g. a tumour.

Seizures commonly happen as people are falling asleep and as they are waking up in the morning. I would ask for an EEG.

Anyone can develop it at any age, but with you having a son with it, it's more likely for you.

Whoopaday · 10/02/2024 18:29

@Ralphsroom24 be prepared that you might be waiting 12-24months to see a neurologist, so if you have the means it might be worth seeing someone who works in your trust privately to speed things up.

Original poster
Ralphsroom24 · 12/02/2024 20:56

Well he I’ve been having symptoms for over a year so I can’t imagine the wait will be a problem

OP posts:
TinglyandCurious · 11/06/2024 21:47

hi @Ralphsroom24 any update? I’m having similar symptoms. Seeing neuro on Thursday.

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