I was considered to have been “PPMS” for the first 13 years of my MS. Then I suddenly had flares, resulting in temporary symptoms, e.g. speech slurring. So now I have the label “progressive relapsing”, which only around 5% of people with MS are considered to have.
Personally, I find the categorisation of MS unhelpful and distracting.
I wrote to the MS Trust, and they said:
"I suspect that the way MS is currently defined may change in the future as neurologists are already beginning to talk about MS in different ways, as detailed below:
Clinically isolated syndrome – not active OR active (ie relapsing remitting MS)
Relapsing remitting MS – active (experiencing relapses or subclinical activity as seen by MRI) OR not active
Then with the progressive forms, rather than splitting them into SPMS and PPMS they are beginning to talk about 4 clinical types:
- Progressive MS – active with progression – which is where your diagnosis of progressive relapsing would fit if you are having relapses but are still also experiencing progression, this description would also fit an individual with SPMS who was continuing to have relapses along with ongoing progression
- Progressive MS – active no progression
- Progressive MS – not active with progression
- Progressive MS – not active and with no progression (stable)."
I then wrote to the MS Society, and they said:
"The neurologists [with whom they consulted] all said that now we have disease modifying therapies (DMTs) it’s more important to classify MS in terms of:
- how active it is (ie, how many relapses, how many new lesions are appearing on the brain)
- whether someone’s MS has relapses or not (if they do then DMTs can help)."
So my understanding now is that, regardless of progression, you need to ask yourself/your neurologist if you’re having flares/relapses and whether DMTs would be of help to you or not.
(I’ve decided they probably wouldn’t help me much, and I didn’t think much of the potential side effects.)