Hi. I’m new here and have just registered.
I have had numbness symptoms since Jan and have been referred for an mri and emg which I am awaiting. I thought the Mri was going to be brain and spine but I just found out it’ll just be brain. Isn’t this remiss? I’m in limbo hell and heating up my hell with damn Google so have myself convinced I have ms and not the remit relapse kind because I’ve had a completely useless arm for six months now. Which is quite long is it not? I am in quite a bad state emotionally and feel devastated today on discovering I won’t get a ‘thorough’ Mri. Possibly delaying either diagnosis or the ruling out of problems.
Is it usual to just do a brain mri? Don’t lesions show in the spine?
Thsnks.
Hi Tilly
I’m afraid I’m no expert in these things and am likewise awaiting referral for ‘odd’ symptoms which come and go.
Hopefully someone more experienced than me will come along and help with your question but I wanted to reassure you you are not alone. I do appreciate how lonely you must feel and worrying this is - I too have had a numb left hand for 15+ months now, whereas my other symptoms tend to come and go/exacerbate when I am unwell/under stress.
Try to stay off google if you can. I do appreciate it is difficult - I do it and should know better as I am a healthcare professional myself!
Incidentally, did the neurologist organise your MRI or your GP? If it was your neurologist I’d like be fairly confident s/he knows what he is asking for.
All the best
Jane
Hi Tilly, Generally MS lesions will show up in the brain on MRI, so a brain only MRI scan is often the first scan. If the brain MRI comes back clear then you could request a spine MRI. There are also several mimics of MS on MRI - deficiency in vitamin B12 for example.
Hi Lenney. Thanks for this. I have been reading a bit about this just over the past few days actually. I’ve not had a blood test for a while and have had an unexplained folate deficiency in the past. I do take folic acid and have a diet heavy in green veg so in theory I shouldn’t be deficient but I’m thinking I will try and request a blood test with my gp
jane, the neurologist requested the mri. 15 months is a long time eek. I am going insane after six months. I have other symptoms too and they are adding up rather than coming or going.
It’s so difficult to know how to feel. On one hand I am desperate to know what is going on. On the other a definite diagnosis will be utterly life changing so do I want that? But limbo is hell
if it is a vitamin deficiency that will be crazy. Something so simple. But if so its been so long that might suggest permanent nerve damage. Which would’ve been utterly needless. I wonder why my gp hasn’t suggested a blood test. Cheaper than several mri scans. I had one already in my neck looking for trapped nerves.
Tilly
Limbo is hell, I’m with you on that.
Don’t underestimate B12 as simply a vitamin deficiency. Pernicious anaemia is a chronic illness which untreated can cause permanent damage. I agree, it would make sense that routine testing should be the norm when a patient’s presenting symptoms are similar, however I understand that some neurologists do test for this as part and parcel of their investigations. A friend has RRMS and has 3-monthly bloods which, I believe, include Vit B12 and D, so perhaps there is some link between the two?
It is positive that you are under the care of the neuro team now and I am sure they will get to the bottom of this. However, from what I’ve read here and elsewhere, it often just takes time.
In the meantime, yes a trip to your GP to suggest B12 testing might be a good idea.
Take care.
Thank you.
My mri letter just came through actually and thanks to reading the mri sticky (thanks to whoever wrote that) I realised that 3t mri unit was not merely a name (like a ward or floor name) but may be a type of mri so I googled it and sounds quite heavy duty. More detailed than 1 or 2t. That’s reassuring at least.
Hi Tilly.
Spinal problems can usually be detected by a physical exam (hey, even I could do it, but i could not say just where) but if they have not found anything, then there is not much point in doing a spinal scan.
It can be the other way round, there is an identified spinal problem and the brain scans come later.
The 1T, 2T, 3T, refer to the strength of the magnets (measured in Teslas). A lot of NHS scanners are only 1.5T. So, 3T means that there is a better chance of finding something if it is there to be found.
Do note that some relapses can last for several months, so don’t write off RRMS just yet.
Geoff
Hi tilly
do you mind me asking what area you are in and how long your referral from gp to specialist took?
Many thanks
x
Hi. I’m in south west London. I have minimal health cover through work which covered an initial private consultation. I had already had an mri on my neck via the gp which was quick. Through an in-health clinic. I got that appointment within a fortnight of the gp referral. Then saw my gp again two weeks after the mri to see the Mri report. It referred to a disc bulge so the gp referred me to a neurosurgeon then, suggesting I might need surgery. This is when I had the private appointment. The gp picked a consultant I could see privately instantly and then also later if necessary via the NHS. I saw the neurosurgeon two weeks later, so a month after the neck mri, and he said the bulge didn’t account for my symptoms and wasn’t an issue. Said I needed a brain Mri and electromyography. (To rule out some horrid things - thanks google). He wrote to my gp two weeks ago saying refer me back to him at the NHS hospital and he’d arrange the tests. I spoke to his secretary early last week and got my brain mri date for next week and electromyography tests the second week of June. I won’t get any results until after both. Although it feels like forever that is more about my mental state. Actually I think it’s all quite quick. Especially for the NHS. I’m hoping that’s a reflection on the area not my symptoms. The secretary had said the appointments would be up to a six week wait. It’s a fair bit less. im not sure how long is have waited for an NHS appointment if I hadn’t used my health cover. It’s speeded up the initial process thank god.
Thank you Geoff. I’d rather be able to write it all off. And get a diagnosis of 18th century female hysteria so I could say to self silly girl. Snap out of it then freed with all clears, wake up with my symptoms gone, and get on with looking after my small person. From a mentally healthier position. A quiet mind may not come for some time I suspect.
This is a strange place to be. I had a sort of expectation of dementia and or cancer in my later future. Statistically we all do. Other health issues never crossed my mind. Until I googled spastic hand with yawns I’d never given MS a thought. It’s not very publicised it seems. No big awareness campaigns. Though I guess one only notices when it becomes personally relevant. It’s dementia awareness week this week. Out brain really can let us down can’t they. It’s very cruel.
Hi there,
i had full bloods done today. Thanks for flagging that for me. I should get the results on Thursday.
TM