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Ever Had a U-Turn?

Hi everyone!

Been guesting on here (on and off) for about 18 months. Just had a letter from my neurologist saying my diagnosis has now gone from ‘possible MS’ to ‘probable MS’. My scans fit the McDonald criteria, and I am now waiting to see the MS Team, instead of going back to the neurologist.

I think they’re telling me it is MS, but has anyone ever been built up to believe a dx is just around the corner, and then been cruelly dismissed and relegated back to ‘limbo’??

So close, and yet so far!

That’s not really very helpful of the neurologist, is it?

I guess he is the person to answer the question - you’re getting mixed messages if he’s saying that on the one hand you match the diagnostic criteria for MS and are being referred to the MS Team, but on the other hand it is only probable rather than confirmed that you have MS. It would be reasonable for you to ask whether you have or you haven’t and, if you haven’t (or haven’t quite), what piece of the diagnostic jig-saw is still missing. That’s what I’d be after.

I am sorry that you have this kind of conundrum to deal with at a tricky time for you. No one in his right mind wants an MS dx, but a person needs to know where he stands.

Good luck with it all.

Alison

Thanks Alison.

I think my neurologist just doesn’t want to make the wrong diagnosis. Let’s see…

x

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Oh yeh! Been there a few times!

I began with walking problems way back in 1997…saw a neuro a year later and he said it looked like PPMS.

It took another few years before I got a 90% sure dx of PPMS.

The following year a different neruo dismissed MS and said it was HSP…yeh, what the chuff is HSP I said. He explained it. Then another later yet another neuro said, it wasnt HSP but PPMS.

And guess what? Push on another year and we were back to HSP.

Thats a tale for you innit!

pollx

Hi there,

You may be surprised to learn “probable MS” is, in fact, a formal diagnosis in its own right.

MS investigations can have any of the following outcomes:

  • MS (usual to specify what type, but they don’t always)
  • Possible MS
  • Probable MS, or, of course…
  • Not MS

A move from possible to probable does indicate an increase in the likelihood that MS will eventually be diagnosed. I forget exactly what percentage of “probables” do go on to be confirmed, but I’m sorry to tell you I think it’s the large majority. Much more than the “possibles”.

It still doesn’t mean you necessarily have - or will have - MS, but it would take a brave person to bet against it now.

I skipped “possible” altogether, and went straight in at “probable”, and got a confirmed MS diagnosis a few months later.

I did feel my neuro knew from the start it was MS, but I didn’t know 'til much later (from this site and elsewhere) that they have very strict evidential criteria for diagnosis, so there was probably a gap between what he knew or sensed (that it was MS) and what he was able to prove - which meant he couldn’t go stronger than “probable” at first.

If he’d only explained all this, it would have made much more sense, instead of me feeling he already knew what it was, but then started back-pedalling.

If he’d just been honest, and said: “My experience tells me this will turn out to be MS, but the rules say we still have a few more boxes to tick before I can make that official”, I would have understood what looked like a reversal.

Even my GP didn’t understand why he was reluctant to diagnose - she probably wasn’t familiar with the criteria he has to work to, either. I don’t know why they won’t just explain the rules. Then they wouldn’t be open to all these allegations of sitting on the fence, or trying to hedge their bets. Patients would be in the picture about exactly what they need to diagnose, and which bits are still missing.

Tina

x

Tina, as you know, my story contains many years when “possible/probable MS” was said. I never knew that those words were accepted as an actual diagnosis.

Just a comment that’s all hun.

Luv pollx