Length of time to diagnose PPMS

I was diagnosed with CIS is 2021.
Single brainstem leison.
Ive had symptoms of right sided weakness /stiffness for 3 years.
Started very subtle. Very gradual decline in functioning. Used to run 5k cant do 10 mins now. Struggle to write sentences. No periods of relif. Just plateau or subtle decline.
I have neuro in two weeks. Im concerned its heading towards ppms. Could i still be waiting years for diagnosis? As if my hand gets worse i will struggle to work. I need to halt this progression.

I exercise religiously 3 to 4 time’s a week. Strength, flexibility and cardio. Nothing is helping. I eat incredibly well and am a PT.

After 3 years would they look at a ppms diagnosis? Or do they need more time to see more leisons and deterioration?

Thanks in advance


I can only comment on the lifestyle issue and you really shouldn’t think exercise is not helping, because keeping your muscles as strong as possible will allow you to keep what you have, for longer. Also, a good diet of fresh food can only help improve general health and that must be a good thing.

I hope you get the answers you need.

Hi Dawn. There is a wide variation in which symptoms affect different MSers.

I showed typical PPMS from onset, but t took 22 years to diagnose as just 2 lesions were hiding.


Hi, My symptoms started around June 2020 but it was not until a year after that I was sure something wasnt right. I visited my gp in June 2021. I was diagnosed with ppms in August 2022.
I’m pretty sure that everyone has a different story. If found the anxiety difficult and I sympathise with anybody looking for answers and reassurance.
Have a good day everyone.

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Hi Daunieo
I saw your post and just wanted to let you know that for me (in the world of MS diagnosis), i think it was quite quick.
Diagnosed CIS following a fall in January 2020 having had no symptoms of MS whatsoever prior to the fall. Literally 3 weeks after the fall my right leg stopped working (thought I’d had a stroke or something), had a barrage of tests via my excellent Neurologist, was diagnosed CIS in 2021, MS ‘proper’ in April 2022 with confirmed diagnosis of PPMS in September 2022.
It’s been a steady decline in my mobility cognitive abilities etc etc and as everyone with PPMS knows it will only go one way.
But I feel lucky that I have a superb team of specialists around for support as things progress and I wish you, and everyone else all the very best going forward. I get such support reading the posts on this forum from some amazing people, it’s so good to know we’re not in this on our own….
Thanks all!