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I still haven't seen a neuro, can I consider myself diagnosed?

Hi all,

I’m getting more and more confused every day and every hour seems to bring another emotion. I still haven’t seen a neuro, I live in Wales, everything is a bit remote here and it will probably take another 2 weeks until I can see one. What has happened is that an MRI shows lesions (2, I think) in my upper spine that indicate MS - this is from the radiologists’ report and I was told by my GP. From the information I can find on this page, that seems to be a pretty definite diagnosis, but I’m not sure how definite until I see a neuro. Realistically, can they really mean anything else? My symptoms are not as bad as a lot of the stuff I’ve read on this page, but - as far as I can tell - also indicate MS: my reflexes and balance are off and I can’t walk properly. I had a pretty important exam yesterday (4 days after I was given the MRI results) and was really nervous about it and in that context had a lot of fatigue and tingling in my arms and woke up with a limp hand on Sunday. It only lasted for about 20 seconds, but freaked me out to no end. This all adds up to a pretty definite diagnosis to me, and I know you are no doctors, but should I take this as definite even though I haven’t seen a neuro?

I’m also applying for jobs at the moment and wondering if I need to put this down as a disability?

On a different topic, can somebody explain the difference between a relapse and a flare-up to me?

Thanks very much, any responses are very much appreciated!

Best, Mareike

Hi Mareike,

Sorry, but I don’t think that’s anything like a definite diagnosis, no. It has to be in person, with a neuro. And finding lesions on MRI is not, by itself, enough to diagnose anyway. Have you definitely had at least two distinct “attacks”, or experienced continuous deterioration for at least a year? Have you had blood tests to rule out absolutely everything else? (Other conditions can cause lesions). Have you had a lumbar puncture and/or visual evoked potential tests?

Unless the majority of these are true - particularly having at least two attacks, or one year’s continuous deterioration - you might get a diagnosis of “possible MS” or “probable MS”, but NOT clinically confirmed MS. It’s possible to have a one-off “MS-like” attack that causes lesions, but never goes on to be repeated. So unless it’s conclusively demonstrated it’s an ongoing problem (further attacks and/or deterioration) it won’t satisfy the “multiple” bit of MS.

Your GP is NOT qualified to diagnose MS - even if they have enough knowledge to say that’s what it looks like. It could still be other things that are similar, but not the same. So no, I’m afraid you can’t consider yourself diagnosed - and it may still be a long road before you are (IF you are).

You do not need to tell anyone you have MS - indeed, can’t tell them so - because you haven’t been diagnosed.

Even if you were, it’s completely discretionary whether you tell prospective employers or not (there might be some very limited exceptions where A1 health is essential for safety reasons). By law, employers are not allowed to discriminate against you by reason of disability, but that doesn’t erase the fear they still might, so some people prefer to shut up about it until AFTER they land the job offer (then it will be obviously against the law if it’s suddenly withdrawn).

Not everyone with MS considers themselves disabled anyway, so if you’re asked whether you’re disabled, it might be yes OR no.

Legally, people with MS (confirmed diagnosis, I mean) are automatically covered by workplace disability legislation IF they choose to declare it - regardless how badly they’re affected. This is the single biggest reason to declare it, and get the protection. However, there’s no obligation to declare. If you don’t think of yourself as disabled, and you don’t want it on record anywhere that you are, then you don’t have to say anything. But you can’t have it both ways: choose to keep it private, but then blame the employer for not supporting you in your illness!

Finally, “relapse” and “flare-up” are used interchangeably, as far as I’m aware. Relapse is the proper medical term, but some people will talk about having an “attack” or a “flare-up”. Occasionally, though, someone might talk about a flare-up when they don’t really mean a relapse. So someone here might say: “My symptoms are really having a flare-up in this heat!” Or: “I got a flare-up after I went to the gym”. They don’t necessarily mean they’re having a proper relapse. Just that their symptoms were aggravated temporarily.

Hope this helps,

Tina

Hi Tina,

you have no idea how helpful this is! Thank you soooooo much for you detailed and quick response! It’s not great being in limbo and I’m sure I’ll come to hate it very quickly, but this morning I wasn’t even sure whether I was in limbo or not - which is a state of confusion unto itself.

You really just made my day! Thank you!

Hi Mareike,

What a lovely response! I’m so glad I was able to help.

You see, I was worried you might really upset by news there could be more of the waiting game yet.

It IS horrid, being in limbo - and I remember it well. Even being in a similar position to yourself, when I thought I’d been diagnosed - 'cos neuro told me verbally - but then backed off when it came to put it in writing, and I only got a “probable”. It was another six months and a second scan to move from “probable” to “confirmed”, because as I said, they have to satisfy themselves it couldn’t have been just a one-off attack. There has to be proof it’s ongoing.

Tina

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Hi I had a spinal lesion on MRI in 2011 and in 2012 and in 2013 it has gone. MS was suspected but as I had clear LP and clear Brain MRI - I have been told that I had a myelitis attack which has resolved. I have been left with some residual damage which effects walking. I am hoping that with physio that it will improve.

To get a dx of MS you need to satisfy the McDonald criteria (google that)

Moyna x

Thank you, Moyna!

my brain MRI was clear, too. And my difficulties walking started with an inflammation of the sacroiliac joint and not with a classic ‘attack’ and my last blood test from April didn’t show any MS markers.

I guess I really managed to get my GP to share my ‘always-be-prepared-for-the-worst-case-scneario’-attitude. I suppose only time and more tests will tell now. It’s quite possible that it is MS, but I really need to stop getting ahead of myself. In that regard, of course, being in limbo is really bad, but at least I know that nothing is definite, and that my GP got me a bit too panicked a bit too soon. But it is quite comforting to know that it can still be other things.

Thanks so much!

…I know that it looks like I’m completely over-reacting here, but my GP really made it sound as if seeing the neuro was just a faormality to confirm what we already know!

My neuro said he would be very very reluctant to dx MS with someone with a clear MRI of the brain. MS markers can only be seen when they compare the blood with the spinal fluid (ie do a lumbar puncture). If you have a clear LP and a clear LP then you would be very unlikely to get a DX of MS as you would not satisfy the McDonald criteria.

So be positive.

Take Care Moyna x

Sorry I meant to say clear LP and clear brain scan !

Hi MJ

one of my biggest frustrations are GPs that know nothing about MS and across the country you will find that applies to most of them. It’s also however a great thing too. Neurologists are the only people that can diagnose MS. If a neuro had said it looks like MS I would say you probably got as near as a diagnosis as you would at this stage.They would still however tell you to go away and life your life until you had another episode unless you’ve had symptoms before in your notes.

in 2007 my mri showed one big lesion in neck and multiple in brain. My symptom list was huge and lasted about 4 months. technically however it was a first attack and classed as clinically isolated syndrome. Some people never have another attack, others do very quickly.

6 years later I am back here with a thankfully minor relapse. Neuro is now happy to say MS. My advice is to concentrate on getting well, regardless of any diagnosis. at the time I thought it brutal but my neuro said ‘live your life, if it is MS it’s not going anywhere’, turned out to be great advice. My learnings from this time were not to get complacent and let stress get to me.

In this heat and with the stress of exams alongside whatever is going on in your body you could have a wealth of temporary symptoms. The more you look for them the more you will find. Try to look after yourself and not worry too much about what labels any of the doctors will give you.

Take care

K

Sorry, me again (I do have a life away from this forum - just not much of one, I guess).

Just to clear something up: there are no MS markers to be detected in blood. That’s one of the things that make it soooo hard to diagnose. The reason they do the blood tests is to try to rule out lookalikes.

It is possible to have MS lesions in spine but not brain - however, it’s relatively unusual. Typically they would be in both - or just the brain. Having said that, my MS was first detected by way of a spinal MRI, but only because they’d never looked at my brain, as they thought I had a “slipped disk”. The spinal abnormality prompted a brain MRI, and hey ho, six lesions there too. There is no way of telling, but I’m guessing I might have had the brain lesions for quite some time, but with few or only mild symptoms. It wasn’t 'til I got one in my spine that things really started going haywire, which led to my diagnosis.

If you get them in the brain, it can be remarkably efficient at reorganising functions so you hardly notice (until the damage is quite bad, at least). However, with the spinal cord being such a narrow channel, if you get one in there, there’s not really any workaround, so you’re more likely to have noticeable problems.

Tina

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