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.

[Rosielee93]

When is the mri? You can always go to gp before hand and ask for something for your nerves like diazepam or propranolol. I had a brain mri last year they're definitely not the best but they're not the worst. You get headphones to listen to music and they talk to you through a speaker in the mri. I know its scary but atleast once you had the mri you know you will get to the bottom of it. I had one for a brain hemorrhage (sounds scary i know) and looked scary on the ct scan but once they did the mri they saw that it was just a small bleed caused by a clot but no brain damage or anything else. Its only half an hour but it saved my life.

[Judystilldreamsofhorses]

No advice on your symptoms, but I had a head MRI last year because of facial/dental nerve pain. The people were super nice, and talked me through everything beforehand, and even gave me a “tour” of the machine. The radiographer told me how long each scan was, and I counted in my head. I didn’t get music, and did find the machine noisy, but it was sort of open at my head, with a mirror angled so I could see (that probably doesn’t make sense, I don’t know how to explain it better) and they told me I could stop it if I wanted at any time. My DP came with me but he waited outside the actual scan.

[PenguinsRabbits]

Thanks very much. Not got a date yet and been put through as non-urgent so could be a while yet. That's good you can listen to music.

Brain haemorrhage does sound very scary, glad they made you better. At least nothing on my CT so shouldn't be a bleed and they said only a small brain tumour is possible not a large one. I don't think it will be that as don't have lots of really bad headaches, just have like pressure in head but that isn't constant either. Plus when I can't speak its either when I have just collapsed or temporary and I can find the word after a minute or so. Same with writing, sometimes I cannot write but then in a few minutes time I can go back to it and brain works again. Hopefully just middle age.

[PenguinsRabbits]

Cross posted - thanks for that. Glad its open, I've done 2 CTs and they are fine but the idea of being completely shut in a small tube especially head furthest in does scare me a bit so would be happy with an open one.

[swingofthings]

I had similar symptoms to you, at 3xactly the same age, very worrying but it turned out to be severe anxiety whilst being in the perimenopause.

I too am claustrophobic and was referred for mri. What I found most distressing is that they put your head in a plastic instrument so that it doesn't move at all. That totally freaked me out especially as I had to remove my glasses and couldn't see a thing.

They were great though and told me over and over that they could stop it at any time and all I needed to gldo was press the button they gave me in my hand. I closed my eyes and did deep breathing. After about 10 minutes, I calmed down and even got to the point of finding the mad noises distracting and therefore relaxing. Good luck.

[cardboard33]

I've had lots of MRIs on my brain over the last few years. I do have a brain tumour but I've never had headaches. As other people have said they give you the option to listen to music (usually the same few songs on repeat) and you also have a buzzer thing to hold for if you do need to get out/get panicked. I only realised this recently but there's also a mirror at the top meaning you can see out of the machine, which may help with the feeling of claustrophobia. They're generally around 20-30 minutes although I recall when they scanned my entire brain more extensively it was longer and they talk to you through the headphones to let you know how many scans there are left etc. I'd definitely relay your worries to them before it starts as I imagine it's quite common, and all of the people I've had doing mine have been lovely.

I think it would be useful to find out in advance if you will be having a contrast dye, which is an injection they give you about half way through to make the scans show up better. If you are having if then they will put a line into you before you have the scan for the injection. This is nothing to worry about at all, more it will help you to be prepared if you know in advance. If they've categorically ruled out tumours though they might not do it although from what you have said regarding your speech and writing it sounds like they may want to investigate more in your frontal lobe, so they might do.

My tip would be to wear leggings and a tunic style top (or anything that's just cotton without metal) so you can remove your bra and keep your clothes on as otherwise you have to wear a hospital gown, and no one likes that!

[PenguinsRabbits]

Thanks very much - they have just ruled out big tumours and think a bleed would have been seen on a CT scan and CT was clear. So they said its either a small tumour, viral or anxiety. CT didn't use contrast, they said it was emergency first rough look. But now this ones non-urgent.

Seemed to be disagreement amongst staff of likely cause. Had impression one incharge who said its likely anxiety tells people that a lot as she said most people often go mad at her when she says it and she was taking tests away and the nurses were pulling faces about her and putting tests back and doing them. Then she asked neurologist who said it could be small brain tumour and I needed MRI but non urgently as CT clear. I do have anxiety but physical symptoms appeared very suddenly and severely with no change in anxiety levels or thinking about anything when happened. So could be either but presumably as non urgent they aren't that worried though. Sorry to hear you have had a brain tumour.

[Oldmum55]

I had to have a MRI following a CT. Like you I knew that at least there were no tumours. It's normal to be anxious about the test but really it is bearable, I also had the contrast which I was worried about in case of reactions, but nothing happened. Just about half an hour with the machine up to your chest so rest of body free, they play relaxing music even though the noise at times is louder. Just try to relax and stay still and as they say it's soon over, you have an emergency button in your hand so you know you can always press it.

[cardboard33]

Until they've done the MRI they won't know what is causing it as they can't rule out small tumours etc which is why there's a conflict of information. Even if they do find a tumour it isn't always the end of the world as there's a spectrum. It doesn't mean you're going to die imminently or that your life completely has to change, it just means they can start a treatment plan and refer you to the right team within the hospital, which from experience is helpful when you get people who see whatever it is that you have all of the time.

[PenguinsRabbits]

Thanks very much. Just got a date through - very happy - and its 24th June so not long at all. Not sure what they are MRIing - either brain or brain and spine but will see when letter arrives. I have had the contrast before assuming its the same as for CT and that was fine, no reaction at all. I am fine with whatever result just want to know and whatever it is will deal with it. Obviously if its clear I don't know what next step is but presumably they will.

Still having symptoms - fingertips are permanently dead and left arm goes dead a lot or burning. Tried to practice the neurology tests but only got better once. We will see. Had a private doctor before and she said she expected it will be MS, I didn't believe it but is getting more like it.

[Toddlerteaplease]

I've had loads, I had one as a healthy volunteer for a research study for my local university and had MS diagnosed as the scan showed up lesions. I had no idea! Made sense in hindsight.
I just have a nap in the scanner as it can claustrophobic. I've never been offered music or seen it offered to any of the patients I've taken to scan.
Ask for a blanket as the rooms are cold.

[LauraPalmersBodybag]

Hi op, my dh has MS and some of your symptoms are concurrent with that diagnosis. I would hate to suggest anything more than that as I’m not a medical professional but I’d keep pushing for answers. He was bounced around various depts and in the end we went private as he was in the middle of a nasty attack.

In regards to the MRI, he says: you can close your eyes, he’s always been given a mask with angled mirrors on so you can see out without moving, also often a blanket and headphones.

I hope you find some answers soon. If you’re im/near London there’s the incredible neurological hospital in Queens Square. Having had a few experiences with them, they really were wonderful.

Do DM me if I/we can be of any help. Best of luck.

[lululatetotheparty]

Hi there, I have had a few MRI's and find the sound of the machine weirdly hypnotic, I almost enjoyed it! Regards your symptoms, don't be surprised if you don't get a diagnosis... which can be difficult in itself. I have had neurological symptoms that line up with MS for over 30 years... numerous neurologists including at Queen's Square etc. but still no answer. I also had a very interesting conversation privately with a neuro there who told me he saw a huge number of perimenopausal women, who were also just exhausted (sandwich generation). They were terrified that they were seriously ill but most of their issues resolved over time.... I do hope you are OK.

[PenguinsRabbits]

Thanks very much, that's great I can close my eyes.

I wouldn't be amazed if I don't get a diagnosis, I am hoping I will but nothing too scary. I just want to know why and how can get better, if not completely a bit better. I hate when they just sign you off saying nothing they can do, that is what I am dreading.

Thanks for the kind offer to DM Laura I no longer have private insurance, had to stop work because of this and we moved out of London to countryside. The hospital here seems very good though and its only been a month so that's great. Will see what they find and go from there. A few people on here have said peri to me but every doctor has said no way to that. Not really sure why as I am right age. Had symptoms for 2 years and came on pretty rapidly.

[Toddlerteaplease]

Yes to the noise being hypnotic. It lulls me to sleep. Drives my nuts when they talk to me. It wakes me up!

[PenguinsRabbits]

Just read letter and its just brain and no contrast.

[runoutofnamechanges]

Do you ever get migraines? I had very occasional strange symptoms when I was in my late teens/early twenties - numbness, pins and needles, "heaviness" and weakness in limbs, loss of concentration, vertigo, forgetting words, brain fog, loss of balance. Then in my mid twenties they stopped but I started getting migraines with aura and prodrome symptoms eg numbness/tingling. Again, very rarely, maybe once a year. When I hit my late thirties, I started getting migraines more frequently and the strange symptoms came back. After several trips to A&E because I was forgetful and had numbness, I was finally diagnosed with silent migraine - all the neurological symptoms that can come before a migraine but no headache afterwards.

[Mummoomoocow]

Have your hcp’s considered epilepsy OP?

[PenguinsRabbits]

Not much in way of headaches - symptoms started 2 years ago but didn't include headaches. Had about a month of constant headache a few months back but think that was just my terrible sleeping pattern. Past few weeks have had pains in my head but one at back one at side and scalp hurt at one point at same place as pain and had head pressure too but nothing close to a migraine and mainly gone now. Dizziness came on very suddenly about 2 years ago and its everyday 24/7 and can't balance well at all - only thing I can think of is strange bite mark a few weeks earlier which could have been a tick. Feeling fluish, fever, aches and pains 2/3 weeks out of 4 started same time. After about 9 months of this got very ill after operation and they gave me 14 days double antibiotics and symptoms improved about 50 percent.

I don't think its epilepsy as had a best friend who was epileptic and watched her seizures and looked quite different though not an epilepsy expert, her body would shake a lot and her tongue roll and eyes glaze over I think though was a child at time. Though I looked up seizures and that could be what I am having sometimes rather than fainting, it does seem different especially last time when I couldn't move or speak for a while but I was conscious and could think and hear. Felt I was losing consciousness but didn't. Very blurred vision and felt sick. Trouble speaking since, in some ways like a stroke but wasn't. Thanks. Will look up epilesy.

[notapizzaeater]

Presume with the bite they treated you for Lyme disease ?

[Tingface]

MS and/or transverse myelitis were the two ideas that occurred to me; particularly with the urinary incontinence... impossible to tell without tests though but that’s another one you might want to have a look at and see if it sounds possible. It sounds like you’re on the right path for diagnosis though. Hope you get some answers soon.

[AlunWynsKnee]

Brain MRI by itself is fairly quick. Maybe 15 minutes iirc. Shut your eyes before they put the cage on and keep them closed until it's off. They're used to people doing that.

[PenguinsRabbits]

No they wouldn't give me anything for Lyme as I hadn't photographed bite. Trouble is symptoms start 3 weeks after bite. One of the double antibiotics was one they give for Lyme (Doxy) though but was given for pelvic infection and was 8 months late. The only symptom starting before bite was bladder though that was also odd starting suddenly and severely. The private doctor thought because of that would be MS.

Thanks for all the help.