Progressive disease versus progressive disability

So this morning I saw my neurologist. I asked him if the lack of disease activity on my latest MRI indicated that my RR had become progressive. He replied “well you can call it what you like, but it’s MS, it’ll do whatever it pleases”.

The important point seems to be the difference between disability progression and disease progression. He seems to feel that labelling MS as RR or SP is irrelevant. The only relevant distinction is between PPMS and RR/SP. and maybe we should be moving towards labelling MS as one of two general types rather than 3.

With me it’s the disability progression that is the major problem, but then when you’ve had MS for 19 years and had periods when it’s been highly active then disablement is what you get. I suggested that I was just unlucky with the time I developed MS. If I was experiencing my first symptom now, I’d have been in a better place for all the newer more effective drugs, and my liver etc wouldn’t have taken such a hammering from all the different drugs it’s reacted against.

But he did say that he’ll repeat the MRI in 3 months and see if there’s been any activity since the last one. To be honest, I don’t know what good that’ll do me even so.

Interestingly he also said that the fact of my lymphocytes level having been low since September (caused by Tecfidera) may in itself have protected me from relapses, cos if there no effective immune system then that same immune system can’t go marauding round my CNS attacking the myelin.

Obviously, since I still have low lymphocytes I can’t have any other DMD until that resolves. Plus my liver does seem to like behaving badly when presented with new drugs so chances are even when my lymphocytes recover there’ll be no more DMDs for me, unless I’m prepared to try going back to Copaxone, even though that might cause my liver to overreact.

Ah well. Such is life when lived in the company of MS.


mm, theres a lot to take in but it does make sense to you, so thats what`s important.


What is the link between disease progression and disability progression.

Can the m.s. be progressing and more lesions appearing on an MRI scan but disability not getting worse?

There is no difference between ppms and spms from a future perspective.

hiya sue

i have been diagnosed over 10 years and am fairly disabled now-regular carers, powerchair blah blah blah… but

9 years ago i did say to neuro give me whatever label u want but i am the one that needs to live and cope with this EVERY day so lets say i have the macaroni version! (that means nothing btw, the first word that came into ma heid, i must have been hungry at that appt!)

take care, ellie x


Good suggestion Ellie, and one I think my neuro might have agreed with (except that he seems pretty humourless). I think maybe we’ve all become a bit bogged down with labels. There’s nothing that says a person previously classed as RR is getting more disabled when they become classed as SP. My neuro is leaving me classed as RR (whilst leaving the ‘progressive’ door wide open) but he is basically saying that at my level of disability, it’s more about living with symptoms than taking DMDs.


Hi Ellie,

There’s nithin’ wrong with yer heid lassie. Macaroni is just fine.


Hi Bonnie Annie, i prefer, the linguini type with anchovis, i was given amatriptalin 19 yrs ago & vowed i would never touch another dam med again & didn’t til, 4 mounths then baclofen?? &i was given amantadine!! for fatige & told i was SP M/S

i dont like drugs! im going to eat macaroni now juju,