Neurology - Brain / Spine MRI

[PenguinsRabbits]

I have been referred for brain and spine MRI - not too worried about outcome as CT of brain was clear. I failed several of the neurology tests - I tried to say I should have passed but apparently I failed badly DH watched and said I was terrible at them but he said I have always been terrible and its not new so hopefully just picking up something I have always had. Never been able to tell left from right or flip shapes. Though balance was fine until 2 years ago. I failed the one were you close eyes immediately twice by going backwards, walking in straight line one failed three times, right side and eyesight to right they said was noticeably weaker - can't say ever noticed this, test turn hand over quickly I failed three times.

Anyone been through tests for this and did they find anything? CT scan of brain clear which rules out big tumours and symptoms come and go so think a tumour / cancer very unlikely. I lose ability to speak or write sometimes, get words muddled, forgot things, get confused, incredibly dizzy at times, room spins occasionally. I am mid 40s so could just be my age. Going on about 2 years now, started with very sudden bladder incontinence - thought infection but tested negative. Other symptoms too but come and go. Private doctor thought MS likely, one at A&E Lyme, another psychological. Blood tests coming back mainly normal - had anaemia once, regular urine infections, one pelvic infection, one ovarian cyst, fibroids now removed, enlarged adrenal gland, cancer tests (due to odd bleeding) all negative.

Also am scared of MRI as I am claustrophobic - I said no to brain one before but should really do this. At least having clear CT means its less worrying. Anyone had one? Are you totally shut in? Can you close eyes if brain one? Thanks. Husband will come with me and guess its only 30 minutes.

I’ve also been referred to neurologist recently for some similar symptoms - they suspected Myasthenia Gravis. Don’t know if that’s something that’s been mentioned to you? Not all the symptoms match mine, but a lot of crossover. Turns out I don’t have MG anyway, but perhaps one to consider? Hope you get a diagnosis soon.

Thanks will look that one up. I just got referred by A&E so not seen a neurologist. Think it would have been more sensible to see neurologist first but still good to have mri.

I had to have MRI recently because of a stroke, the first attempt I did freak the fuck out, they give you a button to press to get out. As soon as I got inside the thing I had a panic attack and noped out. I think though it's because I was already in a bad state.

Managed to complete it the next day when I was more mentally prepared, they also gave me a mild sedative. The sounds actually reminded me of kraftwerk, all I could think of was a Bill bailey routine ha, helped keep me calm. Good luck

Thanks very much. Had it today and it went fine, they said it would be about 15 minutes, think it was more than that - DH thinks about 25 mins. I wore leggings so escaped hospital gown, thanks for that tip. They gave me ear plugs, I asked if it was open or closed and they said open which I was glad of, no music very noisy and yes the face mask. Got up and the man said are you dizzy? I said no then he said you are dizzy. I said no again though was but not admitting to dizziness incase they keep me. He said he was very pleased I wasn't going home alone. Feeling dizzy, half deaf and stunned by light 😂 came home with DH happy got through it. Just wait for results now.

Well done! Hoping you get good results.

Thank you - they didn't say how would get results or how long so asked receptionist who said results go back to A&E consultant and phone them in 2 weeks. Not sure that will be right but would imagine if its clear maybe just get a letter or GPs do and if its not they will refer to neurology but will see. Poor receptionist looked terrified when I asked her but just wanted a clue where they go as my results sometimes get lost.

Got results back - its not clear but just shows scattered white matter on brain which is apparently not treatable. The A&E doctor said they don't know what it means but maybe mini-strokes. Will try and discuss with another doctor but no tumour.

Hi there, I am glad you are starting to get answers and hope a doctor will be able to give you more info. Great news that it wasn't something worse!

Perhaps small vessel disease. Very common. Do you have high blood pressure or cholesterol? Really worth getting them under control if so. I am glad it is nothing worse.

Thanks - no normal cholesterol and blood pressure is 109/70.

betterhealthwhileaging.net/cerebral-small-vessel-disease/

Thanks - yes might be that sort of thing.

Asked a neurologist online and he said it could explain my symptoms and its a common finding in elderly people but not common in people my age (mid 40s) and should get further evaluation.

When's your follow up appointment to discuss ?

It’s common to have a tiny bit in your 40s (one spot per decade of life is within normal limits I think). Any more than that would be unusual, particularly with no risk factors (high no, cholesterol, diabetes etc).

I don't think there is a follow-up, its just back to GP but can get GP to refer back. Think its as I went through A&E so only get follow-up if its an emergency though will see what letter says.

I will see what report said but doctor said it had been flagged. Gave the impression there's quite a lot of it but hard to tell without report. No obvious risk factors and no migraines - she said she would guess small strokes but said she really had no idea and she said its not treatable. Online seems to suggest quite a few possible causes some of which are treatable to some degree. I don't think they can do a massive amount but at least if they could say this is or isn't causing this symptom it would be helpful and would be great if they could treat it a bit or at least stop it progressing. No diabetes, normal blood pressure, don't smoke, don't drink, only the odd headache (similar to what had all my life and normally explained by poor sleep, too hot etc). The A&E doctor I saw hardly works there and is a university professor, she told me she tells loads of people their symptoms are physiological and people often get annoyed with her but this time she said she thought wasn't but said she didn't know. Would be happier seeing a neurologist though at least I now have a possible reason for symptoms - some might be physiological but think there's something else going on too. Thanks.

I would certainly urge you to follow up with a neurologist. There are several diseases that could be underlying causes and many of them are treatable (i.e. you can’t repair the existing SVD but you can treat the underlying cause so it doesn’t get worse). Good luck.

Reading your post I realise you have just said that yourself!

I would suggest going to a cognitive neurologist if possible.

Thanks - still not got MRI through to doctors or to me but hospital did send a letter to doctors saying they should refer me to neurology, and saying I'm high for stroke and they should do ECG and blood tests. I actually had ECG and blood tests done the other week which were fine and doctors have now referred to neurology - its not until 29th October but they have asked hospital to move to urgent so might be earlier.

I have found there is a way I can get MRI from hospital records dept - I have to fill in a form, send my passport then they send it to me within a month on CD so may do that. I did quickly see report at hospital just said scattered white matter hyperintensities on both sides on brain of either migraine or vascular origin. They have ruled out migraine as I don't get them and said early small stroke syndrome but untreatable. I'm not sure if neurology will do much but at least I can chat to someone and hopefully see images on screen.

Just got 1 NHS letter confirming appointment and another NHS letter cancelling it both dated the same date with no alternative appointment made. So no neurology appointment now.

That’s rubbish but all too common unfortunately. Can you take the scan to a private neurologist?

Thanks - I don't have MRI at present as they forgot to send it. Am trying to get hold of it but won't have it for at least a month.

I will phone tomorrow and try and see what is going on - are they just rejecting the referral or are they making a different appointment. Strange thing is hospital wrote and told doctors to refer me. Doctors letter (3rd letter about this appointment) said they had made this appointment but had asked hospital to give me an urgent appointment instead. So it could be there's a 4th letter coming. May go down private route if don't get anywhere but no insurance and fairly tight with money atm.

Admin cock up probably.

Private neurology is around £250-300 I think.

Called hospital today and they say they have no idea why I got a cancellation letter as well as a booking letter and on their records the appointment is going ahead. and they were too. Looked like it was booked by GP, cancelled by hospital then reinstated by hospital and letters were standard letters so maybe they have some automated letters.

Apparently a letter has been sent to my GP today and I need to call them about it but lady wasn't allowed to say what its about but important to call GP.

When is your appointment? I'm sorry this is all dragging on for you

Thanks - its 29th October so a while yet.