Yesterday my new, very nice neuro confirmed that in his opinion I have primary progressive MS rather than the SPMS diagnosis I was given nine years ago. Apart from a period of double vision three years before I was referred to a neuro I have no history of relapse, just steady deterioration.
I forgot to ask, can PPMS ever slow down or stop?
Hi Flowerpot, nice to see you on here.
Sorry to hear you have had a PPMS dx… but contrary to what many people believe, it isn’t necessarily the ‘worst’ type of MS. For most of us it’s slow progressing and don’t think it’s any better or worse than SPMS.
And yes, it can slow down and even stop progressing… or plateau as it’s generally called.
Also symptoms can come and go, can vary by the day (or even the hour!) and some symptoms will be a real problem for ages and then will go away.
Overall though it does continue to progress but the rate of progression varies from person to person and there is no way of knowing if it will slow down or stop. Really it’s best to take it one day at a time… deal with the symptoms you have today and don’t try to guess what the future might hold.
Hope this helps. Ask any other question you have on here… between us we’re a mine of information!
Pat xx
In a way it was a relief to be told what I always believed. I’m also feeling less fobbed off.
My philosophy since diagnosis has been to:
Try not to worry about what might happen, because it might not
Hi Flowerpot
Your philosophy is spot on, no point worrying about things that may not happen.
Pat has given you good advice, the only thing I can add, is definitely take one day at a time, and be kind to yourself.
I have had this for many years now, and yes, I do use a power chair, but that is only a tool to make my life easier, and my progression has been a slow gradual thing, and some people even plateau, so please don’t think this has to be the worst type, it is just a label, we are all different.
Welcome to our little ‘gang’, lovely friendly people here, and together we have a wealth of knowledge.
Look forward to seeing you here again, and any questions ask away, I am sure someone will be able to answer.
Pam x
thats a great philosophy ,its mine too, i always told my self from the start to deal with things if and when they happen,it seems to have worked for me this past 23 years.
J x
Hi Flowerpot and welcome I have had PPMS diagnosed twenty odd years ago and its fun, yep fun I laugh at myself on a daily basis just think what all those able bodied people are missing out on
I am also a cynical git so dont take a word I say without reaching for the salt.
Have a good day. Pat covered it all so I wont repeat it all but say a smile is the best thing I have
Don
Hi Don
Good to see you here, a lot of us have been worried about you, hope all is OK(ish) for both you and Heather.
Pam x
Hi Don,
Ditto what Pam says
Hope you’re as ok as you can be?
Nina xx