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Has your neuro ever been wrong?

Hi everyone, before I start I really want to thank you all for your patience and kind words over the past few weeks. I realise all I do is post about myself, but as I have no diagnosis, I don’t feel qualified to respond to others!

I was just wondering if anyone has ever been told by a neuro that they don’t have MS prior to an MRI, only to then find lesions on the scan. The reason I ask is that I’ve been told by a neuro that my symptoms are not consistent with MS (numbness, weakness, dizziness??) and that they’re probably just happening to me for some other reason i.e. I have extremely low vitamin D.

The reason I ask is that I have a private MRI scheduled for Tuesday just for “reassurance”, I’m unsure whether I should bother! It’s £800 and my neuro said he’s sure that I won’t find anything.

I really just want to know if anyone else has had the same experience and what the result was. Should I trust my neuro? I see a lot of distrust towards them on this site.

Hello,

The decision is yours to make. To my mind, the reason your Neuro has said that to you is due to you having a normal clinical exam. When they exam you, they are looking for signs of abnormality. I am very confident in that I wouldn’t have been sent for an MRI unless I had failed the exam.

If you want further reassurance and have the money then pay for the MRI but I personally would wait and see how the vitamin D supplements work out before having a scan.

Sam

Thank you Sam! So is a normal clinical exam reassuring? I’ve seen a few people with MS say that they have normal clinical exams? Is that something that happens often or is it just not possible?

I can’t really answer that because I can only really speak about my own case. I wasn’t aware it was possible to have a clear exam, it wouldn’t make much sense, the lesions would give some kind of deficit if only mildly. Someone else may be able to clarify this for you.

After my Neuro examined me he said it was reasonable to send me for an MRI after his findings. That is why I say I don’t think he would have if the exam had been clear. I was seen by an NHS consultant but he also has a private clinic in London. I wouldn’t have paid him to send me for an MRI if he had reassured me.

Sam

Okay thanks very much for that response. I’ve had numerous exams, the only thing they could find was that I have numb patches but they didn’t think that was significant as all my reflexes are fine. I think I’ll just have the MRI for peace of mind

So who is going to interpret the gobblegook the MRI Technician writes; no Neurologist will; they did not order it.

Neurology is not a definite science; not enough is known about it and symptoms are very easily misdiagnosed.

Fill yourself with knowledge and save your £800. Read Rizzos document on brain and MRI https://community.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/brief-beginners-guide-brain-and-mri NO GOBBLEGOOK.

The very important thing is the resonance of the MRI. Nearly all NHS MRIs are 1.5 Tesla; you need at least a 3 T to get a good picture.

Here is an email she sent me that explains why lesions sometimes don’t show.

The last T2 FLAIR scan I did of my brain used 70 slices (on a 3T scanner). The one I had done today - 13 (on a 1.5T scanner). THIRTEEN. THIRTEEN!!!

Thankfully I wrote it out the voxels/T2 reply in Word before posting - to avoid the dreaded time-out! So here it is…

A MRI image typically consists of voxels (3D pixels). Slice thickness is one dimension (on the z-axis if you think of maths). The images you see on the CD show you the other two dimensions (on the x- and y-axes). You can set the voxel size to anything you want, in any dimension; all that happens is that it changes the time the scan takes to run (and therefore, of course, how much it costs). The smallest voxel size used in everyday MRI is typically 1mm x 1mm x 1mm. The “off the shelf” scan that I used to use for this size of voxel had 176 slices. The voxels (and slices) cover the whole brain irrespective of what the voxel size is – nothing is missed out (but see later).

If a standard T2 sequence is used for the scan, white matter gives off a poor signal and shows up as dark whereas lesions (which are full of fluid) give a strong signal and show up as bright.

However, the brightness of a voxel depends on the average of the response from the matter represented by that voxel. So a voxel that is 1mm x 1mm x 4mm will show the signal generated by all matter located in that 4mm3 cube. That is, if the voxel only contains white matter it will be dark in the image, if it only contains fluid it will be bright, but if it contains a mix of white matter and fluid it will look somewhere between dark and bright, depending on the proportion of the different matter types.

So if you have a large voxel (say 4x4x4) and a small lesion (say 1x1x1), the overall signal in the voxel will only be slightly higher than one without a lesion (and therefore look only slightly brighter, and therefore may be overlooked). [NB Small lesions would also not always be completely contained within one large voxel – it is more likely that it would be partially in at least two. So this makes it worse.]

But if you have small voxels and a large lesion, then you will get several very bright voxels (where the matter is all fluid), some intermediate voxels (where there is a mix of fluid and white matter), and some vaguely brighter voxels (that contain predominantly white matter).

In other words, small voxels are much better for detecting lesions.

So, can lesions be missed if you use thick slices? Basically, yes. It is entirely feasible. However, they would have to be much smaller than the slice thickness because if they are closer in size, they would contribute sufficient signal to make the voxels significantly brighter than the surrounding voxels and would (should!) be picked up by a decent radiologist. Saying that, it is possible that it might be missed if a small lesion, by chance, spans lots of voxels (e.g. if it is centred on where four voxels meet on that slice) and the signal is lost by the averaging with the white matter signal in those voxels.

However, there are new “pulse sequences” (the settings that programme the scanner) that are particularly sensitive to fluid. If you use one of these rather than a standard T2 sequence, you will be able to use bigger voxels and still be able to detect lesions relatively easily. And the power of the scanner makes a big difference too. A 3T scanner is much better than a 1.5T scanner.

So, if a hospital has a 1.5T scanner and a neuro is ordering a standard T2 scan, then he should be asking for a high resolution (i.e. small voxel size).

If the hospital has a 3T scanner and the neuro is ordering a FLAIR or another new type of pulse sequence that’s good for fluid, then he can get away with a lower resolution.

[NB A related point: it is possible to set gaps between slices. For example, the MRI may capture signal from 0-4mm, 8-12mm, 16-20mm etc rather than 0-4mm, 4-8mm, 8-12mm etc. This would DEFINITELY miss lesions!]

So the trick to not missing lesions is not so much about the number of slices, but about the voxel size, whether or not the slices cover the whole brain without any gaps, the power of the scanner and the choice of pulse sequence.

So save your money; ask your Neurologist if you could have an MRI using a 3T scanner; or even a 1.5 scanner with contrast.

Sam is right; calm down and get your vit D results first; as the great Doris Day said; what will be, will be.

George

Initially diagnosed RRMS then quickly changed to PPMS.

To be honest I think they have got it completely wrong. Most of my symptoms have gone apart from fatigue.

But that could be how MS works.

Okay thanks everyone!

My vitamin D is definitely low, just wondering if I can attribute my symptoms to that alone… I hope so

Oh not more worry from you Worried22?

If your neurologist wouldn’t personally advise you have an MRI, and it’s going to cost £800, why do it? You already have a perfectly good explanation for your symptoms. Which never did sound much like MS anyway.

Why not do as Samantha suggested, take the vitamin D supplements for a period of weeks or months, see if your symptoms improve, have your vitamin level retested, then if you still want to, have the MRI?

You really have got yourself all worked up over these symptoms you’ve had. Now that you have actually been diagnosed with something real, and been given a solution, can’t you try to stop panicking about MS?

Have you seen your GP lately? And explained your terrible fear and worry about all this? Is it possible that s/he could give you a prescription for something to help with the anxiety. Or possibly some CBT?

Maybe you could live with putting off the MRI for just a few weeks, see your GP, take the D supplements and see what happens in the New Year?

Sue

Worried22 I agree with anon who initially answered your question. To suggest that anything other then a 3T scanner is insufficient is a sweeping generalisation and I’m afraid also plants the seed that those who’ve had clear MRI results on a 1.5 scanner are being misled and cheated out of accurate results. The reality is things can be missed on MRI but on the whole anomalies are not the norm. If your MRI is clear the MOST likely explanation is that it’s because there is nothing sinister there. Simple as that. It’s not the neurologist that reads the report, it’s the radiologist who are qualified to spot things that are not normal, whatever that might be. They send the report to the referring doctor who wil also look and work out what to do next.

If you are worried then crack on and have the scan. Don’t bog yourself down in the strength of the scanner because that means if you get a clear result you’ll then be worried that it’s because your lesions were missed. I really think you should have faith in what your being told by your neuro but peace of mind and being able to rest easy are priceless feelings and I say this only because of what I’ve read of your story and the palpable anxiety it’s causing you. Perhaps ask your gp how long the vitamin d will take to have an effect and start to clear up your symptoms and then make a decision about MRI then but if you know you can’t wait (and that’s not unreasonable) then have the scan. Lots of love and luck to you.

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Thanks so much for that response. I’m not particularly worried about the strength of the MRI etc, just whether or not I should even bother having one! I know that vitamin D deficiency can cause weakness but I’ve never heard of it only affecting one side of the body which is what concerns me :frowning: I think I will have the MRI. It’s a brain and cervical spine scan. I’m best just getting it over with for peace of mind

I don’t understand what you mean by “doesn’t sound like MS”, a loss of strength, numbness and dizziness are classic symptoms so this website leads me to believe. If I’m worried, then that’s my concern. You really don’t have to keep telling me that I have anxiety, I’m fully aware. My GP knows too. I’ve been taking the supplements and I’m only getting worse by the day

I am glad you are getting brain and spine scanned, that will be best for reassurance.

Good luck for Tuesday x

Sam

Thanks so much Sam x

Been reading your posts Worried and you do sound ‘worried’ haha hope you are feeling better.

I think what Sue meant when she said it doesn’t sound like typical MS, in that ‘clinically’ you are not presenting like you have MS. As in your examination from a neurologist was clear, you haven’t had any strong indicating symptoms like Optic Neuritis, Trigeminal Neuralgia, the typical pattern of limb numbness/tingling leading to other numb areas, or heat sensitivity (or at least haven’t mentioned it).

Obviously general weakness and numb patches by themselves aren’t necessarily a sign of MS, or a strong indicator of MS in particular and can be attributed to a number of things.

TBH your symptoms could also be attributed to Coeliac disease, GAD and depression etc. You have a VIT D deficiency though so it’s probably that. But I thought maybe Coeliac disease reading your posts as you have a vit deficiency which is common is Coeliac disease, and you don’t have to get obvious stomach problems with it. Coeliac symptoms include:

“Nervous system injury, including numbness and tingling in the feet and hands, possible problems with balance, and cognitive impairment.”

link Celiac disease - Symptoms and causes - Mayo Clinic

and Anaemia is a symptom, which you already had!

So as you can see, your symptoms are not obviously MS. And you seem to be focusing on certain symptoms and not others. Try not to ‘over’ focus on MS/put all energies into one disease. You may also be physically fine. I suffered Anxiety for years and thought I must have something physically wrong with me and ‘must be dying’…

And, be patient as vitamin deficiencies can take several months to sort as you body adjusts, nothing will happen over night.

By all means have a private MRI, but it won’t necessarily get to the bottom your problems as it may not be MS at all. Try not to focus on one illness and let the doctors diagnose you/do what they think is right. Doctors are not always against you, some are obviously better than others. But out of all the doctors you have seen, they are not all trying to stop you getting better/feeling better. Some are helpful!

I am still on my diagnosis journey myself, but remaining relaxed as there’s nothing anyone can do unless they know for sure what it is.

Hope your journey is kind to you. x

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Thanks so much, I’m really hoping for good news. I’ve noticed recently I feel more off balance when I get out the bath but apparently vitamin D deficiency can cause heat sensitivity too. I’m just fed up of these little numb areas popping up and my weak right side :frowning: trying not to stress x

hi worried

what about asking to be referred to a different neurologist.

my own neuro was a general neurologist but he was brilliant.

see your GP and ask for help finding out what is wrong with you.

carole x

I think neurological symptoms get much worse with heat?? I think!

For example, I have a constant tingling and numbness in my legs, but when I have a hot bath or on a hot day the tingling turns into actual buzzing and trembling, and then the feelings in my legs change completely, it’s very strange! Sometimes the buzzing is so bad I can’t walk.

I think Vit D can cause some very strange symptoms too though, but I don’t expect you’ll see much improvement for ages.

Good luck with your MRI x

Thanks guys, I do trust my neuro, I just trust my own body more. He told me that my symptoms couldn’t be due to Vit D but he’s not sure that it’s MS either which just leaves me with so many questions!! Like why is this happening to my body then?!