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MRI clear but MS symptoms getting worse

Hello, I am new to this forum and was wondering if anyone would be able to help or just talk?

I had my MRI 2/3 weeks ago and went to the doctor about a rash/prickly heat on my forearms as well as face and to notify the of my extreme tiredness and muscles aches - to be told my MRI scan was clear.

Apparently the neurologist wants to see me still.

I am very unclear as to what is happening to me??

I get extreme tiredness, muscle pain, pins and needles, lack or coordination, memory loss, mixup of words or even trying to find the right word could take me ages, I often lose control of my bladder and my bowels.

All of this comes and goes and at the minute have been off work for a week due to extreme fatigue, extreme aches, little sleep, dead arms and legs and it feels like I can’t go on. I can’t even put on a pair of socks without feeling like I need a massive rest afterwards!!

I swear doctors think I am making things up - has anyone had any similar experiences and what did you do?

I know it is effecting my work and I can’t not work as I have a mortgage.

Would be so grateful of any feedback.

Thank you.

Hi,

I do feel for you. Am in similar situations: loads of symptoms but scans relatively normal.

It is good that neuro still wants to see you - I would make sure to set up a plan with him/her for future ( in case of your symptoms get worse). they might discharge you or not. I don’t know. I don’t know what they are going to decide abut your symptoms and diagnosis.

Perhaps do more tests - LP? Blood work? EVP? thats good but if not, then press on them to put a plan in place.

You can’t just be left alone and discharged with all of the symptoms. If they are affecting you so badly something should be done even if they can’t diagnose you on the spot.

Bets of luck

hi dryingout dragon

the neuro must suspect it is a neurological issue and may want to do further tests.

if you are offered an ms nurse this person will be able to refer you to physiotherapy which would be an enormous help.

for your toilet problems, go to the bladder and bowel clinic, formerly called the continence clinic.

you can refer yourself or your gp can.

they are very helpful and make a great effort to minimise the embarassment for you.

carole x

Hi Sarra,

Thank you for your reply.

Have you yourself been diagnosed?

Take Care

Hi Carole,

Thank you for your response.

Have you yourself been diagnosed and if so had an MRI scan?

I feel that physiotherapy would help but unfortunately I do not have the money to fund it myself.

Thank you for the advice.

Take Care x

have you been tested for Lupus or Lymes?

Lupus you can have rash on face, and lymes both of them give out very similar symptoms to MS.

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If your neurologist still wants to see you then s/he must think there is something neurological wrong, either the MRI was actually unclear and another is needed. Or maybe it’s not MS, but something else, as CC has suggested Lupus maybe? And perhaps the GP telling you the MRI was clear was a bit misleading.

Most of the respondents on this thread have been diagnosed with MS including myself. Many of us are old hands at this MS / MRI malarkey.

If you need physiotherapy, it is available on the NHS, an MS nurse (as Carole suggested) can refer you, but so can your GP or the neurologist. There can be waiting lists, as with everything NHS related and there is as usual a bit of a postcode lottery.

If you don’t yet have a neurology appointment set up, try phoning your hospitals appointments team and asking them if they are in the process of arranging one, or try the neurologists secretary.

Sue

Hey Crazy Chick… No I haven’t been tested for either - does that come up in blood results, as I am having more on Friday.

Hey Sue,

Thanks for your response.

I went back to my GP today and she advised me the same - to chase up my neurology appointment. I did and found out an appointment hadn’t been put in place so I now have one in 2 weeks time.

I will ask the neurologist to sort physio as I feel this may help too - thank you.

May I ask when were you diagnosed and in what circumstances?

Sorry if you don’t want to say

Take Care

Charlie x

Hi Charlie

It’s good news that you have an appointment with the neurologist. So you can run through the clear MRI results and your symptoms.

Your question to CC earlier about Lupus, there is a blood test which can detect anti nuclear antibodies (ANA test). Is that one of the blood tests which you have booked for Friday?

I have had MS for over 20 years, diagnosed for 15. A very different diagnostic pattern to yours as I had positive MRI, LP and VEP from the first symptoms. But it was a very different world 20 years ago, so people weren’t necessarily diagnosed immediately; there was no point as there were no disease modifying drugs.

Hopefully your neurologists appointment will give you some answers.

Sue

Hey Sue,

Thank you for your response. I am having a full blood test on Friday - not sure wether that will be tested for though? Thought al blood tests were the same tbh!!

My symptoms are now calming down which is great news, just worried about jumping back into full time work again! Only time will tell!

Tis very strange that a lot of people seem to have MS symptoms nowadays with nothing showing on a MRI scan - maybe there is a new form which is waiting to be diagnosed?!

Thank you for your help.

Kind Regards

Charlie x

Hi Charlie,

Unfortunately the majority; nearly all; NHS MRI machines are 1.5 Tesla. To get a good resolution (picture) you need a 3T or above. Having contrast enhances the picture quite considerable.

I will copy an email sent to me by Rizzo; she who must be obeyed on anything to do with MRIs that may be the reason why lesions do not show. Then again it may be there are none to show; sorry to be as helpful as a chocolate teapot.

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.

BACK AGAIN, I do suggest you read https://community.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/brief-beginners-guide-brain-and-mri that is Rizzo’s explanation about the CNS.

George

Hey George - gunna be completely honest…that went straight over my head!! I kind of understand now why a standard MRI could miss pixels, voxels, lesions, wormholes :stuck_out_tongue: Thank you for your help, I will ask my neurologist if he can confirm what MRI scanner was used, chocolate teapots are in fact quite useful :slight_smile: Thanks Charlie x