STUDY: Benign MS usually isn't that benign

[ActiveMSers]

Even for those who have minor disability over 10 years (EDSS<3), multiple sclerosis is still relentlessly working its magic. Another reason to not let down your guard and to stay on top of this disease. I'm curious if these patients were on therapy, off therapy, of if it was a mix. - Dave

Benign multiple sclerosis: a new definition of this entity is needed

Jorge Correale jcorreale@fleni.org.ar
Department of Neurology, Institute for Neurological Research Dr Raúl Carrea, FLENI, Buenos Aires, Argentina
Isabel Peirano
Department of Neurology, Institute for Neurological Research Dr Raúl Carrea, FLENI, Buenos Aires, Argentina
Lucas Romano
Neurology Department, Hospital Privado de Comunidad, Mar del Plata, Argentina

Abstract

Background: To study a cohort of benign multiple sclerosis (BMS) patients beyond physical disability, including the evaluation of cognitive and social function, as well as fatigue, pain and MRI studies.

Methods: A cohort of 342 patients was prospectively followed for 10.9 ± 0.71 years. Forty-three patients (12.5%) met the BMS diagnosis criteria [Expanded Disability Status Scale (EDSS) < 3 after at least 10 years’ disease duration], undergoing full neurological examination every 6 months. Neuropsychological status, pain, fatigue, social functioning and work-related disability, as well as brain MRIs, were assessed yearly.

Results: By the end of follow-up, 20 of 43 BMS patients (47%) had suffered cognitive impairment and 23 (53.3%) referred depression. Furthermore, 21 (48.8%) reported significant changes in pain intensity, with fatigue and environmental severity scores significantly increasing over time in 33–35% of patients. Finally, 32 BMS patients (74%) showed significant increase in the number of new or enlarging T2 lesions, gadolinium-enhanced lesions, and persistent black holes, without changes in EDSS. Thirty-five of 43 patients (81%) fulfilling the BMS diagnostic criteria showed significant worsening of cognitive function, fatigue, pain or depression during the 10-year follow-up.

Conclusions: Currently accepted criteria for BMS diagnosis may cause overestimation of true prevalence, underscoring the need for routine monitoring of non-motor symptoms and imaging studies, to help physicians improve diagnostic accuracy as well as therapeutic decision-making in this subgroup of MS patients.

[manis]

Interesting study

Thank for posting this, Dave. Do you know where it was published?

[ActiveMSers]

Multiple Sclerosis Journal published 24 August 2011, 10.1177/1352458511419702

I did find another study about benign MS, which went out a full 25 years. From the same journal a couple months ago. - Dave

The psychosocial and cognitive impact of longstanding ‘benign’ multiple sclerosis

Mult Scler June 15, 2011 1352458511410343

Ana-Luiza Sayao
Neurology, Department of Medicine, Brain Research Centre, University of British Columbia, Vancouver, Canada
Anna-Marie Bueno
Neurology, Department of Medicine, Brain Research Centre, University of British Columbia, Vancouver, Canada
Virginia Devonshire
Neurology, Department of Medicine, Brain Research Centre, University of British Columbia, Vancouver, Canada
Helen Tremlett and the UBC MS Clinic Neurologists* tremlett@interchange.ubc.ca
Neurology, Department of Medicine, Brain Research Centre/Population and Public Health, University of British Columbia, Vancouver, Canada
Abstract

Background: Benign multiple sclerosis (BMS) is typically defined using the Expanded Disability Status Scale (EDSS), which relies heavily on ambulation. We set out to examine important psychosocial and cognitive outcomes in patients with longstanding BMS compared with patients who had recently progressed to ‘no longer benign’ (NLB).

Methods: A previously reported cohort of BMS (EDSS ≤3 at 20 years disease duration) were re-assessed 25–30 years post-onset. Patients remaining benign (EDSS ≤3 at re-assessment) were compared with those NLB for: depression (Beck Depression Inventory), fatigue (Modified Fatigue Impact Scale), health-related quality of life (MSQoL-54), cognition (Rao’s Neuropsychological Screening Battery), and employment status.

Results: A total of 75% (66/88) of the original cohort were located. A total of 61 patients were re-assessed. Twenty-five patients (41%) had progressed in EDSS and were NLB. Compared with benign patients, those NLB were more likely to have: significant fatigue (15/36 [42%] vs. 18/25 [72%], p = 0.019); poorer physical functioning (mean MSQoL-54 = 67.30 vs. 50.89, p = 0.002); an MS-related negative change in employment status (13/36 [36%] vs. 21/25 [84%], p < 0.0001) and cognitive impairment (3/28 [11%] vs. 5/19 [26%]; trend only, p = 0.317). Depression and mental health quality if life differed little between the benign and NLB patients (p > 0.6).

Conclusions: Despite remaining benign for 20 years, a significant proportion of patients progressed with further follow up. While neither depression nor patient-reported mental health quality of life was associated with EDSS progression, patients with longstanding ‘benign’ MS (EDSS ≤3 for 25+ years) had less fatigue, better physical quality of life and employment outcomes and infrequent cognitive impairment. Remaining benign over the long term, as defined by the EDSS, carried some advantages beyond ambulation.

[manis]

Great stuff

Thanks Dave.

[JudyW]

I was benign for 30+ years and suddenly things went haywire.

[magnul17]

Benign thus far

I was diagnosed last year and thus far, have experienced minor disruptions in my life. However, like the user that posted above me, I'm afraid that I'll be like this for years and years and then everything will go downhill. I have nothing but respect for each and everyone fighting the good fight with MS. We all have our own battles.

[Stella]

Hi Dave,

I find it strange the first study was conducted in Buenos Aires, Argentina considering the further you are from the Equator the less likely you will develop MS theory. Makes me wonder....

****Apologies, I keep thinking north of the Equator and that the Latin people down south are unheard of with MS. This theory is the further you are away from the Equator regardless north or south? Sorry if I am confusing you. I am confusing myself, lol.

[AMFADVENTURES]

I recall the neurologist who initially Dx'ed me giving me a 75% chance of "walking to my grave". Had I not been in shock at the time perhaps I might have had the presence of mind to ask him what he based that on. I wish I had because it seemed to imply that 75% of people diagnosed with MS will not end up severely disabled, unfortunately, to date, I have not seen any scientific evidence on that.

Regardless, I have always assumed that MS is a chronic, progressive neurological degenerative disease, which seems to be what both of those studies indicate. To Dave's initial point, I find it very curious that neither study differentiates between participants who may have pursued drug therapy vs. those who did not. Seems like that would have been much more useful information than merely proving once again, that which was already known.

Being the droll skeptic I am, I wonder where the funding for those studies came from and exactly what the point of those studies really was.