An Introduction

New diagnosis and before diagnosis
1

Hi all,

First time poster after just joining, you already know why I’m here…lol

I’ll try to give you a brief run down of what going on (if you’re interested). Initial symptoms started 4 months ago and left me feeling constantly exhausted with little power in my arms and legs, this quickly progressed to walking with a limp in my left leg after the first month. I then noticed that I was getting a lot of cramp and spasm in my hands and general twitches in the arms and thigh muscles followed by a nasty experience with double vision for about 6 hours one night at work. This is when I went to my gp initially, she suspected RA and referred me to a rheumatologist. I saw the rheumatologist in March he pretty much immediately discounted RA as my bloods were normal, I was sent for an MRI on my lumber spine to look for trapped nerves as the walking was steadily getting worse, he told me that he wanted to rule out MS and thought the problem was nerve damage in the pelvis. That MRI came back clear.

In the time leading up to getting those results back my walking progressively got worse to the point now where it takes me around an hour and 20 mins to walk a route that took me 20 mins four months ago, this again made me go to the GP, she sent me for another MRI on the cervical spine thinking that I had possible myelopathy again this came back clear apart from a little lesion on the spine!! During this time my balance has got worse, dizziness is pretty much a constant now, my left ankle won’t move and I’ve been off work for 4 weeks. I’ve experienced hot flushes, pins and needles (like a constant low voltage shock) in my hands, feet, face, lips and tongue and I’m always exhausted.

I’m sure I’ve missed some symptoms out but I won’t bore you with the rest anyway the GP has now told me she suspects MS and I am now waiting for my first neuro appointment on June 13th in Wolverhampton & from some of the posts I’ve read I’m thankful that I have only had a pretty short time to wait for that.

I’ve got a couple of questions and would appreciate any replies;

1: What should I expect from my first neuro appointment?

2: Do your symptoms seem to change from day to day like mine do? The walking issue is now constant but the severity can change as well as my gait. The pins and needles are always there but can be in one place or another. Is this a ‘one day at a time condition’?

If you’ve got this far thank you for reading and I’m guessing you know full well how frustrated I feel. I really would appreciate any advice, info, links or tips.

Thank you in advance

Jules

2

Hi Jules,

Just on my way out so unfortunately quickie. This will tell you about diagnosis mult-sclerosis.org and A-Z of MS | MS Trust

George

3

Hi George,

Thank you! I’ve just read the first link, extremely useful & probably the most informative piece I’ve seen so far. I will get on to the next one but I’ve got a sudden urge to get some health insurance quotes…

All the best

Jules

4

Nikki and Jules,

I want to explain some reason why PERHAPS lesions do not show on an MRI. Without question the best info on anywhere is from a person named Rizzo; see above a sticky entitled ‘a brief beginner’s guide to the brain and MRI’ essential reading.

Then there’s an email she sent me about the slices/voxels see:

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; add to all this that the spine is more or less a thin; flexible; bony tube that carries billions of axons them nasty lesions do get some places to hide especially if a 1.5 Tesla MRI is used.

May I apologise for using technical jargon but believe me it is the simpliest way to explain.

George

5

Well I guess il have to wait it out and perhaps try and explain the above to my neurologist when I see him in July.

Nikki.

6

George,

Thanks again, that makes sense. I will have to wait and see as I still haven’t had a brain scan, the C spine scan came back with 1 lesion so I’m waiting until the 13th June to know more. It’s a horrible waiting game isn’t it but then you’ve got to try and be positive, ok so I can’t fly around at 100mph like I used to but hey the weathers great and I can do some fishing.

Nikki,

All I can say is keep pestering your gp, I’ve been 7 times in the last 4 months, I don’t think I’d seen them for 3 years before that. If you’re in pain and it making your quality of life worse then tell them. I’ve got to admit mine have been fantastic and I’m lucky that they have put all my referals and MRI requests through as urgent. Make them aware that this is not normal for you and you need something done.

All the best both

Jules

7

Hi Jules,

Sorry you’re posting on this site but can understand why.

My tip is to keep a book on all your symptoms and duration, appointment dates with who, prescription start dates and any advice. from professionals.

This record will be invaluable if you need to apply for Blue badge or PIP in the future.

When you see the neurologist you can tell them. I found I kept forgetting symptoms once they went, or take some for granted as they are constant.

Hope all goes well.

Jen

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