Sorry if this has been raised and answered before and blame it on me being lazy for new going through the threads. My question or issue is I was diagnosed with PPMS in March 2011 and while my condition has got ‘worse’ in the last 6 years - it’s nowhere near as ‘bad’ as I first thought/feared. E.g. I can’t walk as far as I did but only marginally worse. The point where fatigue becomes an issue has got shorter but is manageable. I’m not doubting the fact I have MS and it’s constantly there and some may say I should be grateful as I’ve met other sufferers with the same or other strains who have progressed a lot faster. I’m probably going to answer my own question but does this sound normal - a very slow and modest deterioration? My biggest concern is waking up one day to find what’s been a gentle curve over the past 6 years all of a sudden becomes very steep. I guess that’s the nature and unpredictability of the condition but thought I’d put something out there - not to be reassured but to see if my story resonates with others. For the record, male, 54, try and keep fit with exercise/pilates and watch what I eat. Regards to all and Happy Easter
Hi, just saw your post has had no replies yet, so I thought I`d pop in and say hello.
There was a time when I was wrongly dx`d with PPMS, for several years, so I did learn a lot about it.
PPMS starts as PPMS and doesnt change to another type of MS.
You probably already know that, but some folk think SPMS can change to PPMS.
I think youve done not too badly, being able to walk at all still. Id try to keep what mobility you have. Have you tried FES?
I havent, but I know folk who do and they wouldnt be able to walk at all without it.
We can never be sure, but sudden deterioration, eg overnight, is more common with RRMS, I think.
Carry on looking after yourself as well as you are doing and I think that`s the best way forward chuck.
pollsx
Hi - thanks, much appreciated, means a lot.
I did think about FES but consensus was I didn’t need it at the time but that can all change so keeping an eye on that. My understanding or ignorance is PPMS gets worse (gradually or otherwise) with no remission whereas RRMS comes and goes and can turn into SPMS and then the remissions stop. So yes, SPMS isn’t PPMS per se because you have to go through first stage (RR) but not everyone who has RRMS will go onto SPMS.
But yes, people I’ve met with RRMS do, on average, appear to have more acute symtpons and I’ve probably comparing apples and bananas and the truth as we all know is people are affected in many different ways or to different extremes.
My walking is ok (define ok!) as it’s about 1 mile from the station to my office and I can do that even though I veer from side to side towards the end but some days more laborious that others!
You’re right, I’m reminded of the saying “you have MS but it doesn’t have you!” and that’s been my philosophy for the past 6 years and I try not to over-analyse stuff and do all the usual things as best I can.
Sounds like if you were mis-diagnosed then what you had (to begin with?) was RRMS. I know there used to be relapsing progressive MS but the experts have stopped using the classification so I guess it proves there can be a very fine line between some diagnosis.
Thanks again and speak anon
I think we`re in the same boat.
Hello Christian.
My PPMS has been slow but determined.
It’s given me the chance to adapt. The word adapt however, is a massive factor.
I carried on working for a long time before the beast finally did me. But I’m still battling.
Best wishes.
Hi Christian welcome to the board. No questions are ever to much on here if it’s important to you then it is important to us so you can ask anything here and we will try to help, that said I once asked for the lottery winning numbers
I was diagnosed about twenty five years ago and yes it has been a gradual progress which I have fought against everyday. I do remember waking one morning unable to stand or even lift my legs to get out of bed! It turned out to be a urine infection which my body didn’t like, I was unable to move for a few days until the antibiotic kicked in.
Keep yourself away from stress and infections and learn to give in to your body when fatigue hits.
Hope you are OK
Don XXX
To Scudger, Steve and Hoppity (great names and pics by the way!) many thanks - really appreciate those words, your stories, advice etc.
Reading through the link then really resonates with me - the fact that in a perverse way, I’ve been thinking I’m the odd one out because the progression has been slow and is it normal and the reality is there is no ‘normal’ - we all have lives to live whatever the situation and I’m looking forward to using the forum to speak to others/help me and vice versa.
My message to Scudger is if your MS Nurse is anything like the one I had then hold onto them/use them because they’re worth their weight in gold. And really sorry to hear about your partner - won’t pretend or try and say how that must be but best wishes to both of you.
I thought Pat’s comment re ‘plateau’ was interesting because progressive infers it doesn’t stop - just keeps getting worse even if the scale of change is so small you can’t see it. But it makes you wonder. Assuming what’s broken can’t be fixed then you can see the logic that you get to a point where it does plateau. So if the scale of symptoms is relatively small then it could be one is always going to hover around the same same level. Which also sounds dangerous and complacent.
So things like avoiding stress, infections or even a cold which is my case lays me out for 2 - 3 days; are all sound advice.
Gotta run but came on to check messages and look forward to speaking again soon - very grateful for the words/support.
ATB.
Christian
Christian; research has helped me understand things; hopefully the following is accurate…
Other MS strains are like stairs - you go up a couple then can stay there a long time thanks to drugs or whatever. PPMS is like an escalator - never stopping. It appears your escalator is just inching along… 
I am in my 60’s & still walking. Playing Slo-Pitch this summer may be a challenge if not impossible but I am going to try.
Life is a journey & we all know the destination; I am just going to enjoy the drive.
Edmonton Alberta I went to like your Post but the like button is missing 
I am going to pinch your last phrase for church
XXX Don
Hi Christian
Welcome to the forum, lots of lovely people here, always willing to listen and offer advice when they can.
I have had ppms for many years now, and my progression has been a slow gradual decline, so I consider myself lucky (?) and although I use a powerchair my life is still good, just different to what I imagined.
My best advice to you is take one day at a time, listen to your body, rest if you need to, and if you can stay away from infections and stress.
Best wishes
Pam x
Thanks everyone - means AND helps a lot!
As for that last phrase then mind if I ‘borrow’ it for work
Just to clarify it for you, i don’t have MS at all ie not in any form.
I didn’t elaborate on that, as some folk must be bored with my story by now!
No, i don’t have a definite diagnosis, just a general spastic paraparesis one!
I doubt I’ll ever get to know! I’m in my 20th of ???
Pollsx