Earlier this year I announced that I’d lost my sense of taste and smell. Well, it’s coming back!
I hoped it might but I didn’t think it would.
For a while I’d found food a bit more appealing, which I’d put down to getting use to the loss. But this morning I could smell Gill’s cigarette smoke. So, it would appear that, like optic neuritis, after the initial attack on the nerves, the body has repaired the damage and I’ve got most of the signals getting through again.
It appears that the optic nerve and the nerves of smell and taste can be damaged and repaired.
Could this be a (partial) remission in my PPMS? This could be going on all the time but w never notice the small changes?
Discuss.
Anthony
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Hi Anthony
Well that’s a connunudrum. It implies there’s an inflammatory aspect to PPMS, one from which there’s an element of remission. Which we’re led to believe does not happen.
We are now being told of course that SPMS, once thought to have no element of R & R, can in fact continue to show what they are often describing as ‘flares’ (where that notion came from I don’t know, it never used to be applied to MS, but is now common and is utterly confusing, ie does ‘flare’ = ‘relapse’?). So neurologists are now much less keen on changing a diagnosis from RR to SP, because they say, there can still be relapses with some remission and a DMD is generally only available for RRMS!
Unless that is, you are like me, having run out of options for DMDs, my neurologist is suddenly comfortable with labelling me, if not exactly SP, as ‘having moved into a more progressive phase’. (Doesn’t want to slam the door just in case!)
So maybe, like it’s been said before, call it what you like, MS does what it damn well pleases.
But others who are PPMS need to answer you with their symptoms that have come and gone, assuming that has happened to them too. Or maybe you’re just special!
Sue
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Thank you Sue,
Yes, I am very special. My Mum told me so.
If you want to know what I think, it’s that the four categories are simply convenient hooks for specialists to hang their confusion on. In practise they are all the same disease but MS comes in such a wide range of flavours, like soup, or ice cream; that it’s difficult to decide which one you want. Just not as pleasant.
I hereby move that MS be redefined as ‘Multiplicity of Symptoms’. Because even the boffins can’t agree on anything and they’re afraid of looking silly if they don’t know the answers.
I’m going back to my Special Place now (in the cupboard, under the stairs) and I won’t come out til it’s time for bed.
Bye.
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Oh Anthony…I just love your humour! I’m inclined to agree with you about the convenient hook for the specialists. I was dx rrms last year and put on dmd. Last week, because of my deterioration being so rapid, I’m told it’s actually ppms…but at my request, I’m allowed to stay on Tec…? Not supposed to be any good for ppms yeah? Me thinks they just “don’t know”, so just keep me happy.
Psst! How often are you allowed out of your Special Place? 
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Hi Poppy,
Yes. So that if asked to justify their diagnosis they can point to the Macdonald Criteria and say “Because He said so”.
How often? Only at full moon, Michaelmas and normal opening hours down at the Catheter & Bladder. The licensee, Mr Tonic, & his daughter, Jean-Anne is very relaxed about the odd customer. And I am a very odd customer.
Best Wishes,
Anthony
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