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Not yet been diagnosed

Hi, I have not been officially diagnosed with MS but I am experiencing quite a lot of the symptoms associated with MS.

I woke up about 5/6 years ago with blurred vision in my right eye, I was referred to an ophthalmologist who carried out a number of tests from lymes disease, cat scratch etc but each one came back negative.

They referred me to neurology who carried out the reflex tests and also an MRI and at this stage they ruled out MS as there were no lesions on the brain or spine.

For as long as I can remember, I have suffered with fatigue and random pains through the body.

Neurology discharged me and my consultant in ophthalmology carried out further tests, they put the blurred vision down to multifocal choroiditis with panuveitis which they have been treating with steroid injections (ozurdex) directly in to the eye.

Blood test showed I also have a vitamin D deficiency which I have been taking supplements for ever since.

I have noticed over the last few months pains in my neck and shoulders which are random and only last a few mins, but it’s like a crushing heavy pain.

I have also been having tingling / pins and needles sensation in my fingers (mainly my left hand) and also a tingling sensation around my mouth and chin (just like when aesthetic is wearing off).

I constantly feel like I have no energy and even the simplest of things can be a massive effort.

I am due to see my consultant in ophthalmology in the next few weeks and I will ask him to refer me back to neurology for another MRI, I just wanted to check if there were no lesions 4 years ago, is this something that can occur now.

I have read up quite a bit on MS but I am still concerned and scared that things will get worse, I will be limited with what I can do or it could be fatal :frowning:

hi loopylou

you have been having problems for over 5 years.

see your gp and insist on him/her listening to your concerns.

it is just wrong that your quality of life is suffering.

there are zillions of consultants in thousands of disciplines.

so ask to be referred to someone who can help you.

don’t go down that road of thinking it could be fatal.

chin up girl, get your big girl pants on and fight your corner!

good luck

carole x

1 Like

Thank you, in all fairness my consultant in Opthalmology is fab, I have contacted his secretary to ask if he can fit me in asap in order to be referred to neurology. I just wish it could all be sped up as I have searched the symptioms online which means as I have about 90% of those symptoms, I have self diagnosed which means I a now anxious and on edge as I feel I dont know what happens next. I do not know anyone with MS and can only read things online but the different sites seem to contridict each other and now I am scared about things such as quality of life (I am active, I have 2 kids and run half marathons for charity) and the future :frowning:

I think I just need someone to reasure me and tell me that it isnt necassarily the end of the world, or for just someone to be honest and tell me the kind of life I can expect.

Oh my little darlin,

Just the thought of injection in the eye makes a Spinal :Tap seem a breeze, you’re a brave kid.

Please don’t ask Dr. Google; there’s some strange things out there. Stick to https://www.mstrust.org.uk/a-z/diagnosis or the MS Society.

Read rizzo’s brilliant sticky https://community.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/brief-beginners-guide-brain-and-mri

This is an email sent to me some time ago that explains why lesions sometimes do not 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.

Me again, to save all that injection in the eye stuff; this is Optic Neuritis. optic neuritis - multiple sclerosis encyclopaedia

George

Thank you so much for this, I will spend sometime looking at the links you have included and putting something together to discuss with my consultant when I see him next.

I will ask him to refer me to neurology again so that I can go through the tests again. In some ways I just want a diagnosis so that I can finally find out what is wrong with me but in others I am dreading to find out, I feel that as soon as they tell me my life will change so much :frowning:

Deep down I just want someone to tell me it isnt the end of the world and that I can live a relatively normal life with MS, I dont know anybody with this illness so I have never seen how it can affect someone.

Thank you for your help and advice, it really is appriciated :slight_smile: