Does ‘benign’ MS exist? #ECTRIMS

[MSUK]

While most people with MS develop neurological impairments over time it is clear that some do not. This has been termed benign MS. Its existence and definition are often debated, so researchers have conducted a study to determine if people with MS can have a ‘benign’ outcome 30 years after first symptom onset...Read more - http://www.ms-uk.org/does-%E2%80%98beni ... st-ectrims

[jimmylegs]

http://journals.lww.com/neurotodayonlin ... ?PostID=20

Monday, October 30, 2017
High Percentage of MS Patients Have Benign Course

PARIS—A high percentage of patients diagnosed with multiple sclerosis (MS) did not progress and may fit into a subgroup with a "benign" form of the disease, researchers reported here at the joint meeting of the European Committee for Treatment and Research in Multiple Sclerosis and the Americas Committee for Treatment and Research in Multiple Sclerosis.​

Of 77 patients for whom the research team had consistent follow-up, 31 individuals or 41 percent had normal disability scores, reported Karen Chung. MBBS, BSc (Hons), a clinical research fellow at University College London Institute of Neurology.

"Very stable 'benign' multiple sclerosis does exist," she said, in her oral presentation. "An Expanded Disability Status Scale threshold score of 3.5 showed no significant occupational or cognitive impairment. All these patients remained in the relapsing-remitting phase of MS for at least 30 years."

In the initial cohort, Dr. Chung and colleagues enrolled and followed prospectively 132 patients in the 1984-1987 period. About 61 percent of the group were women; the mean age of the cohort was 31.5 years. About 52 percent presented with optic neuritis; 27 percent had a spinal cord syndrome, and 20 percent were diagnosed with brainstem syndrome. They were assessed at multiple intervals — at five, 10, 14, 20, and 30 years.

During the 30-year period, nine patients were lost to follow-up, and 29 died. Of the remaining 94 patients, 63 underwent scanning and medical assessment; three just had clinical assessment without scanning; 25 underwent an Expanded Disability Status Scale test via telephone using a validated questionnaire, and three of the patients declined to participate, Dr. Chung said.

The 30 patients who only demonstrated a clinically isolated syndrome were dropped from the updated analysis, she said, so that only patients with diagnosed MS who had a history of relapse were evaluated. While 44 percent have continued to be diagnosed with relapsing-remitting MS, 33 percent of the patients are now diagnosed with progressive disease, and 20 percent have died.

All of the study participants with relapsing-remitting disease and Expanded Disability Status Scale scores less than 4 are still working full-time or part-time or retired at pension age, Dr. Chung said.

This study was funded by a grant from the MS Society of Great Britain and Northern Ireland. Dr. Chung has received funding for travel to scientific meetings from Teva and has received honoraria for speaking at scientific and patient-education meetings for Biogen-Idec and Roche.

In a second study presented at the meeting, Ali Manouchehrinia, PhD, a postdoctoral fellow in neuroepidemiology at the Karolinska Institute, Solna, Sweden, presented similar findings in his study of benign multiple sclerosis.

For his study, he considered a case of benign MS meant a patient had the disease for at least 15 years and had an Expanded Disability Status Score of 3 or less. He noted that in the Swedish Gothenburg cohort after 50 years, 10 percent of patients had minimal neurological and neuropsychiatric disability.

Dr. Manouchehrinia evaluated patients in the Swedish national multiple sclerosis registry, identifying 11,222 relapse onset patients with available data – 2,420 individuals diagnosed with benign MS and 8,802 with non-benign disease. He found that the benign patients tended to be younger at disease onset – 28 years versus 32 years; and that benign patients were more likely to be female –75 percent versus 70 percent. Complete recovery from the first attack occurred more often with the patients who later had a benign course.

"Multiple sclerosis is not a homogeneous disease," he said. "A subset of patients with MS accumulate physical disability at much lower rates, are cognitively less impaired, have a better general state of health, and survive significantly longer."

But, Dr. Manouchehrinia advised in his oral presentation, "Benign multiple sclerosis is a retrospective diagnosis and can by no means be used to predict the future of a MS patients."​

Dr. Manouchehrinia had no financial disclosures.

Commenting on the study, Patrick Vermersch, MD, professor of neurology, head of the Multiple Sclerosis Clinic, and vice dean of the faculty of medicine at the University of Lille, France, said: “I am not completely sure if benign multiple sclerosis really does exist.”

“As Professor McDonald once said, 'We know only that MS is benign when the patient is 80 years old.' The major issue is that there is no way to predict who has benign multiple sclerosis. We think that if there is no disability and no MRI lesions after 20 years then statistically it is a good prognosis,” Dr. Vermersch told the Neurology Today Conference Reporter. “But if we look at these patients with low disability, half of them have quite severe episodes of depression, and half of them have some degree of cognitive dysfunction and usually quite severe fatigue syndromes.”

“These people may look normal and be able to walk,” he continued. “They still may have relapses, but it is just the emerged part of the iceberg. Even if they have no clinical relapses, they continue to accumulate lesions in the brain, and continue to degenerate,” he said.

[koneall]

I guess I'm hoping to be in that subgroup, benign MS. I had an attack of vertigo in June and no problems since. How soon does a repeat MS sign happen?

kaypeeoh

[jimmylegs]

for me, never.
any exceptions in the 11 yrs since dx have been associated with overdoing some essential nutrient.
my only long term irreversible stuff is associated with crash/attack #1 and without being a pro would say these put me at about EDSS 2.
ie usually no visible disability but if my core temp goes up with a lot of physical work, i get wobbly.
also constant mild sensory issues, and if i have any other FS troubles i don't know about them.

[Zyklon]

EDSS 6+ to EDSS 0-0.5. So please I want to have a benign MS

[jimmylegs]

you got this lookin forward to seeing next set of results whenever they come in

[1eye]

No. Myths of benign, primary/secondary/converting, etc are mental short-cuts for doctors, but won't help anyone else,

1. Temperature-sensitive. Try hot bath test (not by yourself)
2. Stress sensitive.
3. Bad circulation, worse with age.
4. Brain and nerve MS problems are handed. They may, or not, be very mysterious. See Oliver Sacks. Worse if, by luck, handed-dominance is not the same as lesion-side dominance, because of the crossover.
5. Nutrition and sleep are both extremely vital. Much more so than in non-MS people.
6. Ignorance will kill you. Some kinds of medicine will too. MS is a serious disease. Learn, or die. Like it or not, it's your job. So is being happy.
7. Biotin helps.

The brain's wash-cycle and it's necessity are becoming more common knowledge. Get enough sleep.

I had a heart attack from MS chemo. The heart is the generator of circulation.

I have right brain lesions, left body disabilities. Left grip strength and guitar fretting are gone.

CCSVI is real. I do not deny climate change, that the earth is round, or that CCSVI exists. I had some permanent and some temporary improvements from my CCSVI treatment.

I just came upstairs from basement work-out (use handrails). Was at gym yesterday. Did curls, push-downs, crunches, adduction/abduction, leg-press, and nu-step, which is a sit-down elliptical. All leg exercise is good for my recalcitrant foot lesion. So is electrical machine.

[koneall]

Hmm, my wife keeps nagging me to go back to the gym now that colder weather is back. I prefer running on the local 1/2 mile track. But I might see what happens when I use the sauna or steamroom. As a youngster I was a 1100# powerlifter. I was always better at lifting than I was at running. I just hate the idea of spending money and then not going to the rec center.

kaypeeoh

[Scott1]

Hi,

I definitely agree with points 1-6, 1eye. Biotin didn't agree with me and I've never had CCSVI so I just have no knowledge on that. I can also manage a dry sauna but even a hot humid day is an issue so no steam for me.

There's no way I can run but I can do a lot that helps with flexion because of Pilates which is way more challenging than it looks. If you can manage weights, that's great but you are contracting muscle to do it. The old term "muscle bound" comes to mind.

I did try a Barre class one day to see what would happen. Surprised that I could do some things but was killed by the speed of it. My stiffness was the issue rather than the cardio side of it. Learning to move like a dancer is better for me than bulking up. Pilates is the closest I can get.

Like you, I have a right side pontial lesion so the left side is affected.

After my big attack and the spasticity kicked in I originally thought that both sides were equally affected. Over time i realised it's still mainly left sided but the right side gets so overworked, compensating, that it starts to behave like the left. Both sides need to do equal work to stay balanced.

I struggle with the concept of benign MS. Perhaps those people just have a clinically isolated event or the significance of demylination may be overstated.

Similarly, I can't imagine there is a magic bullet that cures everything because the body adapts to the changes it experiences. Exercise that keeps us moving and retains strength and tone just seems so much better than sitting down and waiting for someone to wave a magic wand over us.

Regards,