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Diagnosed but now possibly not?

Hoping someone can offer some advice…

I was diagnosed with RRMS almost 2 years ago following a single episode of facial numbness and balance issues. I had a MRI scan that showed ‘several’ lesions (one active) and a positive visual evoked potential test. The diagnosis was rapid, within 10 months of first seeing my GP!

I have continued to have episodes of facial numbness, leg cramps and some cognitive problems but overall I have been well. I take Avonex weekly and apart from feeling tired (I work full time and have 5 boys) life was going great.

i started experiencing difficulty with stairs a couple of weeks ago that progressed to difficulty with walking within a few days, I contacted my specialist nurse and she arranged a consultant appointment that I had today.

At the appointment the consultant said he was certain that this was a relapse but that he had been doubting my diagnosis of MS as I am usually so well. He wants me to have another brain/spinal MRI to see what’s going on with a view to removing my diagnosis. He did offer me steroids but I declined as I don’t want to take them if I don’t need to and if it’s not MS then will steroids help?

Has anyone else had their diagnosis removed? It would be amazing if I could lose the MS label but is this wishful thinking or a possibility?

Thanks x

I believe the rock solid way is to get a lumbar puncture to check for specific proteins related to MS.

For 13 years my diagnosis was 'depressed alcoholic with psychosomatic pain. In 2012 it was said to be small fibre neuropathy.

As of February it is MS. After my LP next month it could change again if they do not discover these proteins/antibodies.

I have a link, even though it is apparently an NHS one it says your GP can refer you to a neurologist -according to 6 GP’s Ive seen they cannot refer you to any sort of specialist, though I am in Scotland so I dont know if this is different from the rest of the UK.

Hi,

I’m sorry I can’t really help, but this all seems very strange to me. A characteristic of RRMS is that patients are often relatively well between episodes, especially in the early stages of the disease, so I don’t see why that alone is cause to doubt the diagnosis.

One thing that is unusual is to get a confirmed diagnosis of MS after just a single episode, as that is more typically diagnosed as clinically isolated syndrome, or CIS, with the diagnosis only being upgraded to MS if there is another episode.

It makes very little sense to me that your consultant does not doubt you are having a relapse - but a relapse of what, if he now doesn’t think you have MS?

If, for the sake of argument, he thinks your MS diagnosis was premature, and should really have been one of CIS, the very fact you’re having a relapse now should be the clincher that converts it to MS - not removes the diagnosis!

I’ve been relatively well for over 4.5 years since diagnosis. My neuro freely admits that I’m doing a lot better than the “typical” prognosis for someone who’s been ill this length of time (we think I probably had it for some time before, as well). However, he’s never, ever, suggested that casts doubts on the original diagnosis.

MS is a notoriously variable disease, and it’s possible to go quite some time - years even - between significant relapses. This is a known feature of the randomness. So I really can’t see why anyone should have their diagnosis removed, as a result of being “too well”. It might just mean you’re at the luckier end of the spectrum, so far. Which is fantastic, of course, but I don’t understand why it means your diagnosis is suspect.

I’d love to think 4+ pretty good years (without DMDs!) means I can’t really have it, but nobody’s given me that straw to clutch. The MRI evidence was quite unequivocal, and I had new active lesions six months later, so that was diagnosis all done and dusted, and the insurance company didn’t query anything (I felt sure they would have, if there was the slightest doubt), so I knew, then, that there could be no mistake, and however well or not-so-well I did in years to come, I’d still have MS.

Do you actually have a specialist MS neuro, or is he just a general neuro, as it seems very odd to talk about cancelling your diagnosis, just as you’re having a relapse which lends weight to it!

Is there any possibility you might have misunderstood him? Because like you, I don’t understand the offer of steroids either, if he’s saying the problem isn’t MS. If it was some other inflammatory condition, they might still work, so I don’t know if that’s his reasoning?

You should get a write-up of the consultation to your GP, copy to you, so you can see in black and white what he has said, and it might be easier to understand. Perhaps discussing it with your GP might make things clearer, as they would be able to translate any technical terms for you.

IF you are having a relapse, I would expect that to show on MRI, and simply reinforce that you have MS. Really don’t see where he’s coming from - sorry.

Tina

x

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It doesn’t make sense to me…if I understood him correctly he said he had discussed me with a MS specialist consultant and between them they decided that my presentation was not typical of MS.

I felt that he was leaning more towards MS at the end of the consultation but wanted to repeat the scan to be certain. I am confused because I has around 15 lesions in my brain and if not MS then what on earth could be wrong with me!

I think I was diagnosed quickly because I have a dodgy left leg (from an old disc injury) I have absent reflexes and some longstanding sensory problems that I believed was due to the injury but the neurologist felt it was more likely to be MS related.

I am awaiting an appointment for a repeat MRI which will hopefully clear things up, I forgot to mention that I also had a lumbar puncture, it was normal so did not contribute to the diagnosis.

H x