At my lowest point....

New diagnosis and before diagnosis
1

Hello, I’m hoping that typing this and sending my feelings into the www abyss will somehow make me feel better.

I have had on going symptoms for years, in fact it’s a long story but let’s just say I’ve recently been sent to the gp again, who sent an urgent referral for an MRI. The hospital have put it on a routine so it will be 27 weeks for a consultation. I couldn’t wait that long so booked a private consultation in hope he’ll put the MRI on the NHS.

well he asked me about my history and symptoms then gave me a 5 minute health check, checking my reflexes.

During the examination he asked if I’m an anxious person. The proceeded to tell me my examination was fine so he said “my gut instinct is it’s nothing serious”.

i can’t stop crying. I cried when he said this, I cried all night, I’ve cried this morning.

i feel like I’m going crazy, like it’s just another reason for people to think I’m making my symptoms up. I know my mum and husband believe me but even they sometimes look at me hopelessly, I’m so lonely in this, I don’t know how much more I can take.

my symptoms are exhaustion, brain fog, lack of concentration, spasms (in many parts of body inc legs, hands, ribs, face, up private ares), pins and needles in face/tongue,lips/legs, kaleidoscope vision, vertigo/loss of balance/dizziness, weakness in arms/legs, tight muscles in legs/ribs/chest, problem swallowing from time to time…but he said because I have such a wide variety of symptoms it doesn’t sound like it’s ms and his gut instinct tells him it’s nothing serious.

Why do I feel like nobody believes me? I’m an emotional wreck,

I had a scan for ms in 2012 which came back clear. I had another scan on my pituitary gland two years ago and have not long found out (yes, two years later) that the pituitary was ok but the white area at the front of my brain was excessive for my age (was only a t2 scanner) so he didn’t seem to bothered by that yesterday but said he Is at that hospital today so will check that scan again and based on that he’ll book me in for another MRI.

My cortisol levels were also low 2 years ago and they didn’t tell me. So maybe it’s Addison’s disease, but would Addison’s cause the above symptoms? And would Addison bring an abnormality on a brain scan?

Im at such a loss, I just feel broken. I literally feel like I can’t take much more :frowning:

If anybody has some words of wisdom, they would be much appreciated!

Tanya

2

Hi Tanya,

I’ll give you my thoughts until someone more experienced comes along.

Diagnosis of MS requires elimination of more likely diagnoses and observation of brain lesions.

He’s going to look at your scan again today so let’s hope he gets his act together and sets up the full battery of tests that you need to either confirm of rule out MS.

If I had paid for a private consultation I’d expect a lot more than five minutes and a “gut instinct”.

All the best,

Anthony

3

Hi Tanya

​I am sorry that you’ve had such a lousy experience.

At least the neurologist is looking at the old scan and hopefully booking you another MRI. That should give you a clearer answer. Btw, I don’t think the Tesla value of the scanner is necessarily important. My hospital has a new 3T MRI scanner. When I went for an MRI last week I was disappointed that it was in the 1.5T, but was told by the technician that the images would be just as good, it’s more about speed.

I don’t think that checking out the symptoms of another disease is going to help you much (i.e. Addisons). And besides which, it’s not too likely that anyone on this forum can help with symptoms for another disease.

So really, all I can do is sympathise with you over this crap appointment for which you paid. It sounds like the neuro has the social skills of a raccoon. The problem is always that when you have an appointment which differs so markedly from what you expected, you don’t think of the right things to say at the time. So you quickly find yourself back in the waiting room saying ‘what just happened?’

I hope you do get a new MRI and that it sheds some light on your symptoms. I know that in your position, often it would be a relief to get an MS diagnosis (or a diagnosis of something else). Because at least then you’d feel that your fight for answers is over. Of course a new fight would start, to get help with the symptoms.

Best of luck Tanya.

Sue

4

Hi There.

Oh love! I do feel for you. All those awful symptoms must be so hard to cope with.

I’ve just been flung back into limboland after nearly 20 years of being messed about, despite seeing 16 different neurologists!

You’d think in this day and age, we’d get somewhere with a right diagnosis! I’ve had 2 wrong ones!

But no, all we can do is hang in there and keep on going.

I’ve finally decided not to chase a diagnosis anymore.

But then my symptoms aren’t as problematic as your’s.

I’ve accepted my life in a wheelchair, having to empty my bladder into a bag in my side , and having the stamina of a sloth!

Look after yourself the best you can and accept all help willingly and graciously!

Much love Pollsx

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Thank you all for your replies. He called to tell me that the scan did show abnormalities but they were non specific. He said he showed another consultant who was unsure but they’re not concerned. Said I can have another consultation on the NHS and then a scan but it will obviously take months. Said I can get it privately but it will cost £1300 and I definitely can’t afford that! The scan they’re talking of was 2 years ago. It’s almost like he’s totally disregarded how I’m feeling,

I know you can all appreciate the limbo stage so I feel terrible for complaining but with having 3 small children I almost feel a danger. They have a Mum who is struggling and an emotional wreck. I don’t know what to think, what an awful time this is.

thanks for your replies all the same, I appreciate it. Wishing you all the best. Tanya.

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Oh, I feel so awful for complaining when you’ve been through so much!!! I can’t imagine the amount of time you’ve spent waiting for each and every appointment :(. You sound like you’re such a positive person though, I salute you. Bless you, and one day I hope you get an answer.

Thanks again xx

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Tanya, for heaven’s sake don’t apologise!

The whole point of a Forum like this is to allow people like you and me to get things off our chests that polite society won’t allow.

Whatever your issues you’ll usually find someone here who will be dealing with the same sort of shit on a daily basis.

If you haven’t finished, neither have we.

Anthony

8

Hi Tanya

sorry you are being messed about so. 27 weeks sounds far too long to have to wait. I wrote a letter complaining about te treatment I was getting (i.e. not getting) and since then things have speeded up. So it might be worth trying a formal complaint. The whole process is so incredibly frustrating I know. Hope things start to get a little easier.

Kind regards

Rupert

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What a lovely bunch you all are…thank you.

The process is extremely frustrating Rupert!! I appreciate the fact that most of the times, the reason for such a long waiting list is because of serious cases such as cancer etc but it doesn’t make it any easier to manage on a day to day basis. And sometimes you feel as though the Drs look at you like you’re a hypochondriac and I find it so unbelievably upsetting. Why would people lie about such things? Or pay to have a private consultation they can’t afford for example.

Please feel free to share your journeys so far. Thanks again

Tanya

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Hiya Tanya,

I’m afraid I disagree with others who say the resolution of the MRI (TESLA) does not matter. I’ll copy an email from Rizzo; she who must be obeyed on MRI matters.

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; it is typical some Neurologist feel a bit impotent in helping someone with a neurological problem so they diagnose things like depression or even strange complaints like conversion disorder.

This will explain the tests they should go through mult-sclerosis.org and they take much longer than 5 minutes.

Ask on here; in your area; is there a Nurologist people would recommend. You did the right thing but unfortunately got an armhole of a Neuro.

Good luck

George

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An armhole haha!! That made me giggle, thanks George!! And thank you for that piece from Rizzo it’s extremely informative.

Much appreciated, I hope you’re well, Tanya.

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Oh, and as for examination I’m being told that 5 minutes isn’t quite enough. I’m suffering from spasticity especially in my legs and he didn’t check at all…or is this usually the case? At this point I’m totally bamboozled.

Ill read the link, thank you again.

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Hi again.

I set off reading George’s reams of MRI info, courtesy of the gone, but never to be forgotten Rizzo…She was a doll! But my brain stopped taking it in.

But i see it helped you T and that’s what matters.

Please don’t ever apologize and down grade your trials and tribulations, just because mine might sound worse.

They’re no better nor worse than your’s or anyone else’s. I’ve never demeaned other folks sufferings. We’re all in this plugged up boat together. And none of us will sink, cos were all rowing in the same direction.

Much love Pollsx

Ps don’t forget what I said about accepting all help that is offered, ok?

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Thank you again X what lovely people there are, on this forum. After George sent me Rizzos research it seems she knows an awful lots and helped a lot of people! Does she not come on here anymore? It seems the same people from over the years still use this site and I think it’s so nice. You must have made some great friends on here.

thanks and I hope you’re having one of your better days. Tanya x

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Hiya,

Rizzo’s info on brain; good read A brief beginner's guide to the brain and MRI - New diagnosis and before diagnosis - MS Society UK | Forum

George

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Hi Tanya, it’s so rubbish when you feel all this but don’t seem to be taken seriously. I’ve only got a couple of thoughts. On my phone so please forgive the lack of paragraphs. I know it makes it harder to read. 1) Abnormal doesn’t always indicate disease. I am abnormally tall and have a double kidney (or pancreas or something, can’t remember which) but I was just born that way. 2) Unfortunately neurology is complicated. There are a few clinical signs that definitely mean something when they examine you, but other things, particularly sensory symptoms, can mean anything and nothing. Once you start researching it you’ll end up with a list of possibilities a mile long - so best not to really or you will exhaust your brain (speaking from experience) It doesn’t mean they don’t believe you, just that there’s nothing they can objectively measure. My advice is to put your concerns in a brief email to your GP, and ring the imaging dept at the hospital and spk to them directly. Tell them you will go at short notice for a cancellation. I got an MRI on a Sunday this way once.

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Oh and double check that the MRI is going to cover your neck as well as head.

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Thank you for the reply Teal!! :slight_smile: I think I’m becoming more irrational as the days go by because I’m so fed up, it’s an anxious time isn’t it. My husband decided to book a private scan for me on a credit card (for emergencies only) then he proceeded to tell me he’ll do lots of overtime over the next couple of months. Bless him, so I had the scan last night, head and neck. I’m in pain with my ribs now and it’s making me breathless, then getting spasms between my ribs. Just not pleasant. So he’s getting worried.

I have to be patient and I’m sure as you all know, limboland is a place where you’re very up and down, I’m sure that doesn’t stop even with a diagnosis but the not knowing is tormenting. Like you say, there could be many possibilities.

How was you diagnosed, did it take a long time?

I hope you’re well and thanks again. Tanya pe I apologise as I’m on a mobile too!

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Well what I don’t understand is why your paragraphing works and mine doesn’t! Anyway, I have a complicated history of neck and head injury and migraine. Neuro symptoms but ‘reassuring’ MRI with a couple of spots that got smaller over 5 years. Symptoms improved and stabilised, but then 10 years later (last year) I developed a lesion on my spinal cord and a lumbar puncture was positive. My brain scans aren’t typical but I found a Neuro who would dx on my whole medical history rather than just the scans and here I am, working dx of RRMS.

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Me again,

The pain in your ribs sounds like the MS Hug What is the MS hug? | MS Trust

This is just another clue; I don’t know; as the name implies; if this is something only contracted by people with MS? Perhaps someone with more knowledge than me could say if this can be contracted by other complaints.

George