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SPMS and PPMS are the same disease - Dr Giovannoni says

Everyday living
#1

"As you know I am a lumper, and not a splitter, and have rehearsed the arguments for making SP & PPMS the same disease many times on this blog.

What are the arguments for SP & PPMS being the same disease. MRI studiesdemonstrate that lesions on MRI in MSers with relapse-onset or PPMS are identical. The pathology and genetics of the two subtypes are the same. Similarly, when MS occurs in families and the first sibling develops RRMS the second and third siblings may develop either RRMS, or PPMS, in proportion to the incidence of these subtypes in the general population. The pathology of the two subtypes is similar. Once someone with relapse-onset disease develops SPMS it progresses, on average, at the same rate as PPMS. Importantly, a proportion of pwPPMS (~10-15%) will go onto to have relapses; although we classify these people as having progressive-relapsing disease they still have PPMS. I am not aware of any consistent biological differences between relapse-onset MS (RRMS & SPMS) and PPMS. In summary, relapse-onset MS (RRM & SPMS) and PPMS are the same disease." says Dr Giovannoni on the Barts MS Blogspot.

Did everyone else who reads the Blogspot know this is his view? I had managed to miss it, although I read the Blogspot with great regularity.

BTW, the rest of the Blogspot post I have quoted from, Multiple Sclerosis Research: ResearchSpeak: a New Year prediction, is a really interesting meditation on the way forward for all types of progressive MS.

#2

I have often wondered whether it’s hypothetically possible for the RRMS phase of the disease to go unrecognized/undiagnosed, so that, for some people, it’s already “turned progressive” by the time of diagnosis,thus landing them a PPMS diagnosis. It also seems significant that PPMS is mainly found in “older” patients. Could that be because they had relatively benign RRMS when they were younger, which they didn’t know/didn’t notice?

I ponder these things, because I’m increasingly convinced I had MS not just for years, but potentially for a decade or two, before being diagnosed, or even investigated (I had been investigated about six years earlier by Rheumatology, but NOT Neurology).

When I was finally diagnosed, the disease still seemed to be following the characteristic relapsing remitting pattern, thus I was diagnosed with RRMS. BUT, if it was possible for me to go ten, maybe twenty years without noticing (it’s not strictly true I didn’t notice, but didn’t suspect anything serious), would it then be possible for someone to ignore/overlook a non-aggressive RRMS phase altogether, and only be diagnosed when it turns progressive (and things markedly deteriorate)?

Tina

#3

totally agree Anitra.

I’ve been saying for years that these m.s. categorisations are flawed and I too have thought people dx’d with ppms may have had ‘silent’ relapses and subsequent remissions before being dx’d with m.s.

If I have a right leg which is getting gradually weaker and a right arm which feel weak at times what category am I in?

– According to Dr Giovanonni 0/15% of pwPPMS will go on to have relapses - what the hell does that mean?

The neuros have painted themselves into a corner and should admit they got it wrong.

#4

That’s a really good article, and Dr G ends on a very positive note for people with progressive MS, the ignored people (by Pharma). It does seem likely that we are all enduring the same disease, whether we are RR, SP or PP, or at least that we are all living with different aspects of the same disease. But then Dr G is always very persuasive in his arguments.

Sue

#5

I have also heard a neurologist muse about the likelihood (in his view) that in the end we would come to see some of the sub-branches currently lumped together under the general heading ‘MS’ as fundamentally different conditions! Ah well, time will tell.

Alison

#6

So either we all have the same MS or there are in fact way more divisions than the current three (or four of you count the misnamed ‘benign MS’).

Either way, I think the most positive thing to come from this particular blog post by Dr G is that he wants to run trials on combination DMTs for PPMSers.

#7

Remember that song from Meatloaf Tina… ‘You Took The Words Right Out Of My mouth’…? That’s how I felt when reading your story! Diagnosed at the age of 32 (RRMS but soon changed to SP/PP) but strong suspicions that I had a first ‘relapse’ at the age of 11!

#8

you hit the nail on the head Tina. i was diagnosed 1992 with RRMS i feel it should have been SPMS i feel i had already gone through the RR stage from the age of 17 to 32, i didnt know i was RRMS because i always got better.

I had a big relapse in 1992 that led to my diagnosis and my walking was badly affected and never got better.They then decided in 2007 i was SPMS and now this new neuro thinks i am still RRMS ???

i have always thought that i should have been told i was SPMS when i was given my diagnosis.

#9

I don’t want to tempt fate, so trying to touch wood as I type (not easy, with a coffee cup as well), but I find it significant that I don’t seem to have had a “proper” relapse, ever since diagnosis (and I’m not on DMDs).

I believe my peak relapse rate was before I was diagnosed - before MS was even suspected. I did have them, but managed to pass them off as a succession of mystery bugs or mystery injuries.

I never thought they were related to each other, because they all took different forms. I did think I was a bit unlucky, healthwise, but on the other hand, it never seemed to be anything really serious, that didn’t go away by itself.

We had a bit of a family culture that if anything went away by itself, it couldn’t have been anything very serious in the first place - and I think, in most cases, that’s a fairly sound view. However, none of us knew about things like RRMS - which appear to improve by themselves - if only temporarily.

So I always had the view - which I now know was misplaced - that I needn’t worry, because all these strange things always sorted themselves out in the end.

I don’t know how many relapses I actually had, because I wasn’t paying attention! But I think a lot more than I get now. According to the current neuro, I’m still RRMS, despite (apparently) not having relapses anymore. In my opinion, there is progression, but he thinks it’s not dramatic enough to be SPMS. So what do I have? RRMS without relapses, but with progression too slow to be diagnosed as SPMS? What the heck is that, then?

Not that I’m too hung up on the label. My disease is my disease - it doesn’t know what it’s called. If I were told in no uncertain terms it’s now SPMS, I wouldn’t expect it to have much practical bearing. I’d still keep muddling on - as now.

Tina

#10

I too think the categories of ms are flawed. I was dx 8 years ago with PPMS but when I pointed out that I had very mild symptoms ( various episodes of numbness and getting tired easily ) going back to just after the birth of my third daughter 27 years ago) he revised it to SPMS. I remember after my first episode of numbness thinking I hope this is not ms but dismissed it as I felt really well apart from the numbness. All I know is that I am getting progressively worse albeit slowly.

I I am not hung up on labels either,it is what it is. I just hope they get to the bottom of it soon before any positivity I have goes out the window.

Mags xx