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PPMS and numbness

Hi all,

I’m currently awaiting a diagnosis of MS. I’ve had walking difficulties for a few years, plus various other stuff for a long while - flickering eyes, weak ankle etc. I have demyelination shown by an MRI, just waiting for consultant appt to confirm diagnosis which I believe will be PPMS because as far as I know I’ve had no relapses.

Symptoms haven’t really progressed for a long while - 3 years or so - but in the last couple of days I’ve noticed numbness spreading around on side of my back and around to my stomach. I have the number of an MS nurse but not sure what they could do as I’m currently on holiday.

What I want to ask is, because I’m likely to have PPMS, not RRMS, does that mean this numbness won’t ever go away?

Thanks for your help.

Hi Munki,

I wouldn’t jump to conclusions that you certainly have PPMS. It seems unlikely, if you’ve had negligible progression in three years.

RRMS does not necessarily mean feeling fine in between relapses. Most people have residual symptoms from damage that never quite fully repairs. So it’s possible you’ve had a single relapse, three years ago or more, and the symptoms since then are what’s left from that.

New symptoms now could be a new relapse, or might be caused by an infection of some kind.

A few people with progressive types of MS still have relapses superimposed on it, so the different types of MS may not be as mutually exclusive as the conventional picture. Some overlap is possible.

I doubt even a professional would commit to whether or not a particular symptom is likely to be permanent - only time will tell. But remember 85% of people are diagnosed with RRMS at the outset - meaning only a 15% chance of PPMS. I don’t think it’s helpful to try to self-diagnose, and certainly not to get too hung up on whether symptoms will be permanent.

Of course, we all worry and wonder about that, but there’s no reliable way of predicting, so best to take things as they come.

Tina

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Hey

I don’t know much but as Anitra said, it is best not to assume/ self diagnose! Best of luck

Kat x

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Hi, sorry I haven’t come back to this before and thank you for your replies. I finally have seen a consultant and have a diagnosis - probable RRMS. I really thought I must have PPMS because of no discernible relapses - just a few episodes of facial/hand numbness lasting a day or two - can they really be that mild? I never would have gone to the doctor about them!

Anyway, it’s good news if it is RRMS I guess, my consultant is going to put me on a dad after I’ve had another MRI with contrast and he can work out how active it is.

Looks like I’m going to become a regular round here!

*a DMD, not a dad!!