Age at time of dx

Hello everyone A friend of mine with possible MS symptoms has been told by her neuro she can’t possibly have MS as she is too old…she’s 64. Anyone else think this is wrong? Beautiful sunshine today…hope it lasts, Best wishes to everybody Nina

Hi Nina, the neuro is absolutely wrong!

Most people with PPMS are dx over the age of 45… mostly in their 50’s and 60’s… and some in their 70’s and older.

RRMS is usually dx much younger… but as with all types of MS there are always exceptions.

Don’t know where that neuro is getting his info from!

Hope you’re well hon… blue sky and big puffy clouds in London.

Pat x

Hi Pat, Thanks for that Pat, knew I could rely on you…Pat to the rescue as always! I was pretty sure that with PPMS dx could be very late but I just needed to be sure before I answered my friend. Sun is having a long lie in today ! Hoping for better things later. Hope you’re well enough to have a great weekend. Thanks again Pat, Very best wishes, Nina

One of my friends (who has MS) had her father diagnosed with benign MS a couple of years ago. I should think he was in his early seventies - in his late sixties at the very youngest.

Yes, it`s codswallop to say anyone is too old to be diagnosed with PPMS. It is rare, but still possible.

luv Pollx

Thank you Poll and sewing chick, Didn’t know that benign MS could be diagnosed so late…fingers crossed that if my friend has it that it’s benign, although my MS nurse told me recently that she doesn’t believe there is such a thing as benign MS…she feels it’s RRMS that is not quite so bad…not sure if I agree with that or not. Love the word codswallop Poll, haven’t heard it for years! Have a good weekend both Best wishes, Nina

Hi Nina, benign MS is always a bit of a problem area. Neuro’s seem to use the word a lot… but in fact it should only be used when someone has not had progression for 15 to 20 years! (although even that number varies a bit on different websites).

And it is not really a ‘type’ of MS. Somebody with benign symptoms will still have a type of MS (RRMS, SPMS or PPMS), with very mild symptoms. But as with all MS that could change at any time. There is no way to predict the course of MS.

Lots of people think of PPMS as the ‘worst’ type of MS. But it’s not necessarily so.

For instance my PPMS is quite slow progressing and I’m still able to live on my own without any carer (although I do have a cleaner once a fortnight). Although my mobility is poor I’m still able to walk around my own flat, dress myself etc etc. Someone with aggressive RRMS or SPMS will be much more disabled than me.

So really, as usual with all MS, it varies considerably from person to person and can change at any time. Yes it can change and get worse but it can also suddenly stop getting worse… with PPMS this is called a ‘plateau’ or simply that it has burnt itself out.

Hope that makes some sort of sense!

Pat x

Pat x

Don’t even ask why I signed twice!

I was 53 when I was diagnosed with PPMS was told by Neuro very rare to be diagnosed over 50 since then I have met lots of ladies of 60 and over xxxxx

I was 53 when I was diagnosed with PPMS was told by Neuro very rare to be diagnosed over 50 since then I have met lots of ladies of 60 and over xxxxx

  1. Had been feeling rough for a couple of years prior to that. Struggling to walk any sort of distance now. Still working full time. Employer has been brilliant. Don’t ever think the Prison Service doesn’t care about staff. I can’t speak highly enough of them. Al

Thanks everybody Nina x