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.