ClinicSpeak: benign MS is a misnomer

Should we stop using the term benign MS? #ClinicSpeak #MSBlog #MSResearch

“The study below on benign MS illustrates a point that we have made many times before; benign MS is a very difficult call. A significant proportion of benign MSers have cognitive impairment and associated fatigue, depression and anxiety. Therefore is it correct to simply call someone as having benign disease based on the EDSS, when the EDSS is not a very good way of capturing the impact of MS early on? To diagnose someone as having benign MS is very difficult; it can only be done retrospectively after you have had the disease for 15 years or longer. Even after  waiting 15 years to diagnose MS the majority of people with benign disease will end up acquiring disability over time.”

“The good news is that most of what we know about benign MS comes from natural history studies and with new and emerging treatments and treatment strategies (treat-2-target of NEDA) the proportion of MSers with benign disease will increase. It is our treatment aim to make everyone with MS have benign disease.”

Epub: Gajofatto et al. Benign multiple sclerosis: physical and cognitive impairment follow distinct evolutions. Acta Neurol Scand. 2015 May 26. doi: 10.1111/ane.12442.

BACKGROUND: Benign multiple sclerosis (BMS) definitions rely on physical disability level but do not account sufficiently for cognitive impairment which, however, is not rare.

OBJECTIVE: To study the evolution of physical disability and cognitive performance of a group of MSers with BMS followed at an University Hospital Multiple Sclerosis Center.

METHODS: A consecutive sample of 24 BMS cases (diagnosis according to 2005 McDonald’s criteria, relapsing-remitting course, disease duration ≥10 years, and expanded disability status scale [EDSS] score ≤2.0) and 13 sex- and age-matched non-BMS patients differing from BMS cases for having EDSS score 2.5-5.5 were included. Main outcome measures were as follows: (i) baseline and 5-year follow-up cognitive impairment defined as failure of at least two tests of the administered neuropsychological battery; (ii) EDSS score worsening defined as confirmed increase ≥1 point (or 0.5 point if baseline EDSS score = 5.5).

RESULTS: At inclusion, BMS subjects were 41 ± 8 years old and had median EDSS score 1.5 (range 0-2), while non-BMS patients were 46 ± 8 years old and had median EDSS score 3.0 (2.5-5.5). At baseline 16% of patients in both groups were cognitively impaired. After 5 years, EDSS score worsened in 8% of BMS and 46% of non-BMS patients (P = 0.008), while the proportion of cognitively impaired subjects increased to 25% in both groups.

CONCLUSIONS: MSers with BMS had better physical disability outcome at 5 years compared to non-BMS cases. However, cognitive impairment frequency and decline over time appeared similar. Neuropsychological assessment is essential in MSers with BMS given the distinct pathways followed by disease progression in cognitive and physical domains.

13 thoughts on “ClinicSpeak: benign MS is a misnomer”

  1. This is a very important post. I was diagnosed with a 'likely benign course' in 2010. 5 years on I have no major disability but I have had cognitive impairment that came and went. But the point is this: had I been treated with Campath as I asked to be 5 years ago would my 'hidden' MS have been regulated? It's a tough call for Neuros. I am worried I have now entered the SPMS stage…

  2. Oh yes benign MS, there is no such thing in my opinion. To all intents and purposes, this is me. The amount of times I've been told this by neurologists, nurses and other people with MS is countless over the years (MS for over 30 years).I dread getting a neuropyschological assessment because of mood (anxiety and depression) issues with MS and this makes it 1) difficult to establish a baseline (because of anxiety) and 2) would have a big effect on me psychologically if it was bad. On the flip side, it may still be that the assessment doesn't pick up on how bad it is as I still function reasonably well. Its more my ability to multi-task has declined and difficulties in focus if too much going on. My memory outside of a relapse is still very good. What I can perceive may not translate on tests. It's a bit crazy, I'm very aware of that.

    1. Agree with you. Ability to cope and not to go to the doctor every time one has an attack is seen as benign. After nearly 40 years and SPMS now there's still not much on offer. I've done what I was told "go and try to lead a normal life". Not easy, but necessary.

  3. Reg your comment about making everyone benign Ms. I strongly agree with this. I've recently had my first alemtuzumab infusion and my hope/expectation is if it does what it says on the tin I won't be cured but follow a benign Ms path.

  4. My PPMS was pretty "benign" about 5 years in from onset. People did not notice it, and neither did I really, most of the time.Fast forward 10 years >>>>>>>>>>>It's sure as hell not "benign" now.

  5. Re: "It is our treatment aim to make everyone with MS have benign disease."Everyone? Seriously? Even those with PPMS?Or did you just forget to say Everyone with early RRMS and not anyone else?

    1. This is unquantifiable. Progression is in the title with 'PPMS' and therefore not benign. Active early RRMS most definitely progress, and those with CIS, lesions on their scan and OCB most definitely convert to clinically definite MS. Clinical descriptors are notoriously inaccurate, we need metrics which are not 'so-so' but 'more so'!

    2. I wonder if it possible just call benign RRMS 'mild', this has always been what I've called mine (after 30 plus years now). So, on the basis of my experience, I see so called benign MS as a slower than normal progression with a quicker than normal recovery, getting back to very near baseline or sometimes actual baseline. Saying that much of the problem is the EDSS, because it doesn't pay much attention to cognitive problems. And it's quite likely at some point the MS will progress more severely, it just hasn't yet 🙁

    3. "Progression is in the title with 'PPMS' and therefore not benign." I wasn't diagnosed with PPMS in the early years, when my MS appeared quiet, inactive and nothing but a minor nuisance. "Benign MS", applied to a person with many years yet to live, is a meaningless, useless oxymoron. Maybe you can diagnose someone with "benign MS" post-mortem.I can only be happy that nothing could have been done for me back then, as is still the case now. Otherwise the lackadaisical approach to my symptoms (both on my part and the medical staff I saw at the time) would prove to cost me dear.

  6. What is the lesion load on benign MS ie do lesions happen or they do pccur but dont cause any symptoms. I had l'hermittes in 1990, after MRI, LP and evoked potential it was dicided I had transient myelopathy after radiation treatment for hodgkins lymphoma. Roll on to 2005 had slight numbness and dur to clear MRI was told it was a trapped nerve. Foot drop started to appear in 2010 had MRI and lesion seen in spinal cord. Could I have had benign MS since 1990 even though the scan was clear in 2005. I have no diagnosis yet still in limbo. I think I am either benignish PPMS ir benignish SPSM as I have foot drop but no other issues.

  7. "This is unquantifiable. Progression is in the title with 'PPMS' and therefore not benign. Active early RRMS most definitely progress, and those with CIS, lesions on their scan and OCB most definitely convert to clinically definite MS. Clinical descriptors are notoriously inaccurate, we need metrics which are not 'so-so' but 'more so'"If this is the case Doc G, why is there is much hesitation in treating CIS?

  8. If the new aim is to try and achieve NEDA does this mean there might be more of a call for cognitive testing to pick up non-relapse related decline? I haven't had any form of cognitive testing but definitely think my memory is not as good as it was and I lose words more frequently. I fully admit this might be down to being more sensitive to possible symptoms/general ageing/sleep deprived parenthood though!

  9. During my 'Benign' phase my cognative ability was in decline, I had increased fatigue and my walking speed declided. I had to give up work too. On the one hand I am glad that I was not injecting during this period (10 yrs). But now there are alternative types of DMT, I feel that a benign lable should not be used without careful regular monitering.

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