#MSParis2017 – Multiple Sclerosis Can Stay Mild for Decades, 30-year British Study Shows

#MSParis2017 – Multiple Sclerosis Can Stay Mild for Decades, 30-year British Study Shows

After the first round of symptoms, multiple sclerosis can stay mild without causing major problems for decades, a 30-year British study indicates.

Karen K. Chung of the University College London Institute of Neurology discussed the findings at the ECTRIMS-ACTRIMS meeting in Paris, which started Oct. 25 and runs until 28. His presentation was titled “Does ‘benign’ multiple sclerosis exist? A 30-year follow-up study of people presenting with clinically isolated syndrome.

MS affects different people in different ways. Many patients develop nervous system impairments over time, while others remain unaffected.

Scientists refer to cases with no nervous system impairment as benign MS. But its exact definition and characteristics are still a matter of debate. And some researchers contend that benign MS does not exist.

British researchers wanted to know if people with MS can have a benign form of the disease 30 years after the first symptoms appear.

The team’s intent was to follow 132 patients with clinically isolated syndrome, or CIS — a precursor to MS — for 30 years. Some died or dropped out before the study was completed.

Researchers gave the patients magnetic resonance imaging (MRI) scans and disability assessments every five years. The disability yardstick they used was the Expanded Disability Status Scale, or EDSS.

About halfway through the study, the team added an MS functional composite test to the measurements. It assessed leg and arm function, and cognition.

In the very last evaluation, researchers also assessed cognition with a test known as the Brief International Cognitive Assessment for MS.

In addition, the team included patients’ employment history in their analysis.

From the initial pool of 132 participants, 29 had died by the time the study ended 30 years later – 16 of an MS-related cause. Twelve participants dropped out of the study, leaving 91 for the analysis.

Thirty of the 91, or 33 percent, failed to develop MS. Thirty-five, or 44 percent, had relapsing-remitting multiple sclerosis, or RMSS. And 26, or 33 percent, had the more severe secondary progressive multiple sclerosis, or SPMS.

Researchers excluded those with CIS — that is, those who had failed to develop MS — from additional analysis.

They discovered that only 11 of the 61 who had developed MS had received a disease-modifying therapy at some point or other. Eighty-eight percent of the 35 with RRMS had low disability scores, and all were either still working or had retired at a normal retirement age.

Cognition tests showed only mild impairment in three patients.

Researchers said the study suggests that “it is not uncommon for people with relapsing MS “to have only mild or no physical or cognitive dysfunction approximately three decades after clinical onset.”

MS may have a bimodal progression, the team said. Either patients continue to have a mild and stable disease, such as the majority of RRMS patients in the study, or their disease progresses to SPMS.

Nonetheless, based on the results, Chung concluded that “very stable ‘benign’ MS does exist.”

 

11 comments

  1. Prentiss Goodroad says:

    Husband diagnosed 1988 by MRI, vertigo since 1978, – disease benign until approx 1998 with balance issues, fatigue. No drugs available. Then it hit full force – major cognitive decline, walking/balance, urologic, swallowing, speaking, major fatigue. Now nearly 40 years on, he is totally disabled, moved with lift from bed to recliner, cannot complete feeding himself due to fatigue and vision and coordination, in diapers for 5+ years, cannot walk/stand/shift. There is no respite – caregivers care for these patients at home unless you are wealthy – which incapacitates a minimum of 1-2 family member from living “their” lives. Our system is broken – only the wealthy get respite…….they need specialized care from someone who knows their symptoms and what to watch for – different in every person. ….mine is sepsis that shows up before the original infection is even noted by blood tests….

  2. David Kirschner says:

    The neurologist calls me his “lucky man”.

    It’s almost as if the ms monsters had gone into hiding. At first, (thirty five years ago..I’m 65), a smorgasbord of disruptive and mystifying symptoms plagued me. the worst of it happened within the first 15 years.

    Now, 35 years after it all began, my rating on the accepted disability scale would be <2. I feel healthy and eagerly maintain a level of fitness, exercising daily. The neurologist says I have 'benign ms', I rejoice in it, thinking what incredibly lucky person I am!

    • Marilyn Rohlfs says:

      I had double vision in high school 1964, Vertigo 1974, a clinically diagnosed MS attack in 1985, CT ruled out stroke . Went for many different opinions from 1985 .Normal MRI’s , My symptoms come and go Bladder and Bowel urgency since 1992 .Last Friday April 2018 my blood pressure spiked 228/114 and I had exact same neurological symptoms as 1985 which landed me in the hospital 30 days . I was home by Sunday . I was told TI A. My question to my Dr was if this is a TIA, have I been having mini strokes since 1964. His response was He thinks I have mild MS. My MRI now says moderate white matter changes . I do not know what that means. Besides the Bowel, bladder and sporadically neurological disturbances , my legs hurt most every day. If the 1985 diagnosis was correct, at 71 I am lucky . The hospital called in a neurologist but I have not had a neurologist for years . Just all these episodes normal MRI’s and sent on my way. I admit to being panicked about that blood pressure spike because I rad no matter what causes it, I could have a sudden stroke.

  3. Catherine Lawson says:

    I started with episodes of visual loss and severe fatique which lasted for hours age 11. I had facial pain for years which was originally diagnosed as sinusitis in my 20s. An episode of bilateral ophthalmic neuritis age 40. Severe back pain with neurolgical impairment age 48. I was finally diagnosed with transverse myelitis and RRMS age 58. So I’ve had MS for decades and I’m still active and working age 61. The thing is that my mother also has MS and my diagnosis was missed. Maybe that was a good thing as ive pushed myself and kept going. Working as a And and active in the army reserve for 18 years. Thank you for not diagnosing me, normality was my goal every time.

  4. Betjean says:

    Feeling “foggy “ in 2002-MRI normal (but misread)- I had lesions. Intestinal bug in 2004 with dizziness that wouldn’t go away. Positive MRI and spinal tap. Neuropsych rest showed cognitive issues. Dx with RRMS, on copaxone. 2008: flu and optic neuritis. Total blindness L eye with only 80% vision return. Some MRI changes and some symptoms over the years, but no real decline/no disability. Though, in 2016, I too had blood pressure spikes with 2 CT scans (normal), and my BP has remained high ever since. I’m still on copaxone and seeing there hasn’t been any decline, I often wonder if I do have MS….and yes— I feel so blessed and fortunate that I am walking and talking…..and I’m guessing it’s mild MS with possible TIAs. I’m on BP meds and will stay on copaxone just in case

  5. Eva says:

    Optic neuritis at 29, sensory relapse at 39, sensory but severe relapse at 42, started copaxon, mild sensory disturbance and mild optic neuritis at 48. Fatigue comes and go, worse during relapses. EDSSscore 1,5 maybe 2 during relapse. Is it considered mild?

  6. Jo says:

    I’ve just been diagnosed but they think I’ve had it for more than 18 years…mild and hopefully staying that way! I exercise as much as I can, fast to reset my immune system.,something is working! 🙂

  7. nancy konn says:

    In 1989 I was diagnosed with M.S. as I lost feeling in my 1 foot and partial leg. All my feeling returned within a month. 1992 I had my next attack, again with not being able to feel when my foot touched the ground so was unable to walk easily. That feeling also came back and I have not had another notable episode since. I can tell I’m off-balance often so use trekkers when walking and hiking which really helps. My doctor says I have benign M.S. and may never have it get any more serious but you never know.
    I always travel with a telescopic cane that I can fold up small and pack in my suitcase.

  8. Melissa thompson says:

    This has been wonderful to hear I was diagnosed with m s in 2010 then I claimed my healing walked away and just kept pushing myself I am a single mom so got to keep going I have had my episodes that are dismissed by lots of people I have learned my limitations my strengths and I take Alot of over the counter health supplements I stay away from alcohol cigarettes maruianna any other illegal drug stay away from pain pills I have some muscle relaxers I take for the spasms and migraine medicine I take on occasion/I was in a car accident in may and I got a concussion and post concussion syndrome and my attacks especially with my headaches have been noticed by others in my daily living so I had to go back to a neurologist and it is like starting over again I probably have to do the spinal tap thing I passed that up the first time I have gotten use to the pain it has become my normal but since my car accident my headaches make me wish I could chop off my head and the sucky thing is no one understands and every one has totally different m s symptoms I am a cna I have cared for those on the negative end of this but their life style I believe had a lot to do with the severity/

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