Tuesday, 18 June 2013

Benign MS: misinterpretation or misrepresentation?

What is benign MS? #MSBlog #MSResearch 

This is a second reposting in response to the debate around benign and non-benign MS! The posts are from 11 May 2012 and 07/11/2012. 

"I was at a meeting in Liverpool this week and was told by someone in the audience that "I don’t believe in benign MS". This is not correct; I was being misquoted. My stance has always been that you can’t make a call on benign disease up front; benign MS is a retrospective diagnosis. I have seen too many disabled MSers who were told early in the course of their disease that as they have benign disease they don’t need DMTs. I even feel uncomfortable calling MS benign when someone fulfils the contemporary definition of having benign MS, i.e. a disease duration of at least 15 years with no disability (EDSS < 3.5). We know that the majority of these MSers will have significant cognitive impairment when tested and over half suffer from MS-related fatigue. In addition, less than half of these people will have benign disease in 10 years time." 


"The following is the standard list of good and bad prognostic factors that we use to try and predict prognosis; most of these factors were identified in the pre-DMT era and whether or not they hold true in the era of more effective DMTs is a moot point." 


“Please be wary of the diagnosis of benign MS; don’t let it lull you into a sense of false security. Given sufficient time the majority of MSers will become disabled if the disease is left to run its natural course.”

Other posts of interest:

Multiple Sclerosis Research: Research: Benign MS is not Benign
26 Apr 2012
OBJECTIVE: Using conversion to secondary progressive (SP) multiple sclerosis (MS) as cutoff event for selecting patients with benign course, we tested which baseline features affects the probability of becoming "no longer ...

Multiple Sclerosis Research: Brain atrophy in benign MS
29 Nov 2011
CONCLUSIONS: Serial magnetic resonance imaging revealed a low 2-year rate of brain atrophy in MS'ers with clinically benign MS, suggesting a less prominent degenerative component in its pathogenesis than in patients ...

Multiple Sclerosis Research: What is benign MS?
29 Nov 2011
METHODS: 163 benign MS'ers (defined as disease duration > or = 15 years and Expanded Disability Status Scale (EDSS) score < or = 3.0 ) underwent neuropsychological testing on the Rao's Brief Repeatable Battery (BRB)* ...

Multiple Sclerosis Research: Education: defining the course of MS
23 Feb 2012
Unfortunately, there was no consensus regarding other definitions including chronic progressive, benign and malignant MS. Because the definition of these latter terms is unclear, their use is generally discouraged in scientific ...

Multiple Sclerosis Research: Defining what a cure means in multiple ...
06 Apr 2012
... in central London yesterday (5th April 2012) and we got onto the usual discussion/debate about early aggressive treatment vs. watchful waiting so as not to expose too many MSers, destined for a benign course, to the risks ...

Multiple Sclerosis Research: Research: Clinical Course and ...
12 Mar 2012
Benign MS is relatively-low activity disease following onset. This is reported to occur in about 25% MSers with up to 25-30years of follow up. This current study looks to see how Benign is Begin MS and shows that it does occur ...

29 comments:

  1. I was in the good prognosis camp, but am now 55 and SPMS kicking in. Had no DMT's, walking now very tricky and would like to try Fampradine. Pam

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  2. Dear Pam, your history illustrates two points:

    1. Benign MS is rarely benign MS; the majority of MSers will end up in the secondary progressive phase if MS is allowed to run its natural course (without DMTs). I sincerely hope that the new more effective DMTs, will prevent or delay the onset of DMTs.

    2. Symptomatic MS treatments are as important as DMTs. The fact that you would like a trial of fampridine indicates to me that you are having problems with walking that is impacting on your quality of life.

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  3. There does seem to be a lot of interest in some quarters in trying to predict who will be benign in order to save money on meds. A recent study described on MSRC (http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/722) found that "Being a woman and being young at diagnosis of multiple sclerosis were key hallmarks that allowed for 'benign' disease over two decades or more... This higher chance for maintaining a benign status was also seen for younger age at disease onset (ages 21 to 30 versus >30, OR=1.77, P=0.02; age ≤20 versus >30, OR=3.36, P<0.001), the authors reported."

    I wonder how that squares with or if the authors took into account the natural history research that found that "a younger age at disease onset strongly correlates with a younger age when reaching disability landmarks, confirming that even if it takes longer for younger patients to accumulate irreversible disability, they are disabled at a younger age than patients with later onset." (http://www.ncbi.nlm.nih.gov/pubmed/17495619)

    Even if their MS looks more benign over the shorter term, maybe the younger patients are on balance worse off if untreated?

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  4. Hi Dr G,

    All the debate surrounding 'benign MS' is really very interesting, esp as I come from a neuroscientific background and now have an older family member diagnosed last year with 'benign MS', so am doing my best to help support her and help her figure out what's best based on opinion and of course, the science- unfortunately she's had v little input/advice from her GP or neurologist- who's expertise is in the stroke field.

    What I've been struggling with though is finding anything out there relating to if/when/how to treat benign MS.

    It strikes me that treating with DMTs sooner the better would surely delay progression/reduce risk of relapse etc, but treatment guidelines appear to be limited to standard RRMS diagnosis? What are your general thoughts on how/when is best to treat this form of disease- especially given the higher prevalence of cognitive/depression symptoms vs the more typical physical symptoms?

    Thanks

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  5. Nobody can be diagnosed with benign MS. Benign or not is something you will know after 20 years. The doctor is trying to be 'kind'

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  6. Yes, hence my 'benign MS' in quotations. Thing is, about 17 years ago she had been diagnosed with a mini-stroke- then has had periods of severe depression that responded atypically to standard treatment, and a lot of the other symptoms associated with 'benign MS' she has exhibited- cognitive dysfunction, depression, fatigue etc, with no physical manifestation in that period (see Amato et al. 2006 J Neurol p1054).

    Whether the doctor is trying to be kind or not, and she's intelligent and stable enough to be aware of platitudes- she has not been given any other descriptor of her MS other than 'benign'- i.e. as yet, not RRMS, PPMS, SPMS. She had a relapse last year, at which point she was retrospectively diagnosed with MS rather than the original mini-stroke-based on her evoked potential, CSF and MRI tests, and has since had some physical problems- bladder dysfunction, dysphagia etc.

    So, if she doesn't have 'benign MS', what does she have, and how should she be treated? Should we consider that she has RRMS that doesn't yet meet the clinical requirements for therapy?

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  7. Re: " older family member diagnosed last year with 'benign MS'"

    This does not sound correct. Benign MS can only be diagnosed in retrospect, i.e. after at 15 years. How long has your family member had MS?

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  8. Re: "Even if their MS looks more benign over the shorter term, maybe the younger patients are on balance worse off if untreated?"

    I agree! Younger people recover better from relapses, but in the end the restorative properties of the nervous system fail, even in relatively young people.

    On the other hand children have a tough time. When MS damages a developing nervous system it plays havoc with cognition; in other words it affects the development of their brains.

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  9. Re: "What I've been struggling with though is finding anything out there relating to if/when/how to treat benign MS."

    I don't like this stance. I prefer using the term active or inactive MS. We define the former using clinical and MRI criteria. If someone has active MS they should be offered treatment. If they have inactive MS they should be monitored and if their MS becomes active they should them be offered treatment. The latter applies to whether or not you have benign MS.

    In hospital populations ~30% of MSers have benign disease at 15 years, this drops to 15% at 25 years and ~5% at 30 years. In community-based populations, i.e. those MSers not necessarily being followed in a hospital, have a better prognosis; ~45% have benign disease at 15 years.

    In summary, given sufficient time, MS causes disability in the majority of MSers.

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  10. Yes Gavin. To put it crudely I was left to get worse and nothing offered. I contacted GM in Brum and he has trialled me on Fampyra for a month, 20% walking speed improvement. Have asked to take part in Study 4. No funding of course for Fampyra. Will try GP built not optimistic! Don't give up hey? On another note enjoyed MJHylands piece very much and keep up good work. Pam x

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  11. I'm like your first poster, Pam. My symptoms (very mild) wer thought to be 'not bad enough' to warrant treatment with a DMD which of course were less proven back then (we are talking 1980s). But I certainly agree with other comments here, that ultimately, disability accumulates at a younger age (my first symptom started at age 25 - now 30 years later and SPMS I still consider myself 'young' - it's all relative, eh?). It is a huge disappointment to me that there was no treatment thought suitable at the time, and now there is nothing for progressive MS. Thank goodness more effort is being put into this now.

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  12. I am diagnosed with relapsing progressive MS. So not much guessing and believing here :D
    What is a "posterior fossa lesion"? Never heard that term.

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  13. A posterior fossa a lesion is a lesion that affects the brain stem or cerebellum; the parts of the brain that are found in the back and base of the brain.

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    1. If you have many 'cerebellar signs' does it mean you have posterior fossa lesions?
      Why are these lesions considered an indicator of a poor prognosis?

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    2. Thanks.
      Does this include Medulla Oblongata and / or Pons lesions too?

      Delete
  14. Anonymous 3.32 & 3.34 you are a troll with nothing sensible to say.

    Perhaps, before your next post, you could take some english lessons as your grasp of basic spelling, grammar and punctuation is shockingly bad.

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    Replies
    1. As to trolls we don't need them

      Remember not all our readers are native English speakers/writers so if you have sensible comments or questions as long as the English is understood, I can live with a few spelling mistakes.

      Delete
  15. Just to be clear - as one of the participants in yesterday's 'debate' - I wasn't actually discussing the extent to which MS is benign or not etc, although it was taken that way by 'Dr Dre'. I was merely discussing the natural history of MS in population studies which show a longer median time to EDSS milestones than I think is often thought to be the case (in that particular study 27.9 to EDSS 6 but there are other contemporary studies that show similar periods rising to 30-35 years when looking just at RRMS). By definition those median cases are not benign as they have hit a significant disability milestone. The time is takes - as an average - is really important. Saying "the majority of MSers end up disabled given sufficient time" is a bit lacking in meaning; all of us will end up dead "given sufficient time"! The question most people want to know is "what are my odds of x at point y in time?" - eg what are the odds I'll need a cane after 5 year or what are the odds I'll need a wheelchair at 20 years? These population studies help, in some way although not comprehensively, to give some answers to these really valid and important questions and worries.

    MS is a terrible disease. So is cancer. Yet, MS can have a range of outcomes in people just as varied and I think this is poorly understood by most MSers. Even in this study intended to critcise the term 'benign' and cause concern that benign may not remain so (http://multiple-sclerosis-research.blogspot.co.uk/2012/08/research-benign-ms-is-not-so-benign.html) we see around 23% of MSers are still 'benign' (i.e. EDSS less than or equal to 3) even after 30 years. I personally think benign is an unhelpful term and mild (or even extremely mild) or average or aggressive etc are better adjectives but that MS CAN be mild or extremely mild - and not just in very isolated cases - as well as aggressive or extremely aggressive should not be forgotten.

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  16. I am female and was diagnosed at age 60 I had noticed something around 54 my foot would flop at times and some times i would fall. i had a mri and my doctor said we should have another plus i did the spinal tap. he said that i had the protein and i have primary progressive ms. it has been 3 yrs and i am still walking the same and driving school bus. do you think that this could be the benign ms.
    myjoy

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  17. I am female and age 49 and had my first sensory symptoms aged 21 - slight numbness on skin surface of one foot and right of chest. Had double vision for about a week aged 23, then nothing for 7 years - this time sensory symptoms in both legs and arms for about 3 weeks. Then 16 years went by before more sensory symptoms this time more numb than ever before and in three sections, 1 week in May, then back 3 weeks later for about 6 weeks, was nearly better then another onset for about 6 more weeks. Still all sensory. This time I was diagnosed for the first tine with remitting relapsing ms. When this finally backed off in Sept 2011, I was recommended to take the DMDs and am on Avonex. Is this technically benign ms as I have now had this disease for 28 years, and my neurologist said from his physical neuro tests he wouldn't know I had it, although I had the tell tale lesions on the brain and spine on the MRI and activity was seen both in Sept and Dec 2011. would a RRMS diagnosis be made to give me access to the drugs? I can't find anyone else who has presented like me.

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  18. Very interesting - I too am like Pam and others who must've been RRMS in the days when there were no DMDs. I must be the same age as Pam based on her age last year, and v similar but now walking with 1 sometimes 2 sticks, a walker for longer distances. I know you know the urgency of the search for symptomatic and progressive therapies, so here is another post to encourage you in your endeavours (no pressure! :-))

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  19. How is "older age" defined?
    < 30 yo, < 40, yo < 50yo?

    Thanks for more info. :D

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  20. What constitutes a "large lesion load?" Greater than 20?

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  21. I've had MS for 15 years and was initially told it was a good chance it could be benign. Now 15 years later I have no disability and lead and an active life, cycling, kickscootering with the kids etc.
    When I moved I deceded to leave my medical journals behind so my new GP have no idea I've got MS. I decided to do this since they offered me no help whatsoever with drugs since it was "inactive", and I just continued my life pretendig I didn't have MS - because I could :). Not sure if I done the right thing, only time will tell.
    I wanted to take 5000UI d3 vitamin but got terrible tummy cramps, not sure why that is? I've heard that you're supposed to take it with Magnesium and K2 vitamin and will try agin. Best wishes with your research, Marie.

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  22. my mom is in her 70s and was found to have "spots" (lesions?) on her brain- she was told that she had a "light " version of ms (maybe benign ms) but given her age- I cant help thinking this could be a misdiagnosis- anyone have similar experience?

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