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1 week ago | 
rarediseaseadvisor.com | Ed Tobias
The times they may be ‘a-changin’ when it comes to treating older people with multiple sclerosis—people like me. For years it’s seemed as if many neurologists were being guided by a 2017 review by University of British Columbia researchers reporting that disease activity declines as people with MS grow older.
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1 month ago | 
rarediseaseadvisor.com | Ed Tobias
Change can be good. For months, I’d been bothered by leg pain, which I’d chalked up as just my multiple sclerosis (MS) doing its thing. Sometimes it was an ache in one hip. Or the other. Or both. Sometimes it was a sharp pain, shooting from my left hip and traveling down into my thigh via what I assumed to be my sciatic nerve. My glutes always ached. Recently, lying in bed at night, I’d had very painful cramps along my left shin, extending down to the top of my foot.
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1 month ago | 
rarediseaseadvisor.com | Ed Tobias
I like to play games. The Words With Friends app and online puzzles, like Connections on the New York Times app, keep me thinking. Online games can be important to someone with multiple sclerosis (MS), where cognitive fog and fatigue are both common symptoms. So I was very interested when I was offered the chance to try a website and app called BrainHQ. It’s designed to help improve the brain’s processing speed and, by doing that, help improve things like cognition and fatigue.
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1 month ago | 
rarediseaseadvisor.com | Ed Tobias
The headline on the news release that dropped into my inbox recently read: “FDA Announces Plan to Phase Out Animal Testing Requirement for Monoclonal Antibodies and Other Drugs.”Take animals out of the drug approval process? Really? Monocolonal antibody therapies are some of the highest efficacy treatments in the multiple sclerosis (MS) arsenal. They include natalizumab (Tysabri), alemtuzumab (Lemtrada), ocrelizumab (Ocrevus), ofatumumab (Kesimpta), and ublituximab (Briumvi).
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2 months ago | 
rarediseaseadvisor.com | Ed Tobias
Have you ever looked at a research paper and thought, “Why in the world did they waste time and money on that?” I saw one of those reports the other day about multiple sclerosis (MS) fatigue and life quality. The news was headlined “Fatigue significantly contributes to impaired well-being in MS.”The Finnish researchers studied data from more than 500 patients with MS.
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2 months ago | 
rarediseaseadvisor.com | Ed Tobias
I’m writing this from Deck 14 on the cruise ship Celebrity Beyond. Cruising isn’t new to me, but it’s often a challenge because of my multiple sclerosis (MS) mobility problems. This trip hasn’t been any different. I try to plan for all possibilities, of course. Accessible stateroom? Check. Confirm that onshore excursions can handle me with my scooter. Check. Prescription Scopolamine patches to wear behind my ear to prevent seasickness? Check.
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Mar 29, 2025 | 
multiplesclerosisnewstoday.com | Lindsey Shapiro |Ed Tobias
Natasha Quariab relaxes in her garden in Amman, Jordan, in 2023. (Photos courtesy of Natasha Quariab) Day 29 of 31This is Natasha Quariab’s story:I woke up and tried to move my right leg. Nothing. My heart pounded. This couldn’t be happening. Not here, alone in a snowy Swiss village. The previous day, I had walked to the village square, feeling my leg grow heavier with each step. I convinced myself it was exhaustion, but now, lying in bed, I knew better.
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Mar 24, 2025 | 
rarediseaseadvisor.com | Ed Tobias
I’ve never been someone who eats healthy meals. I didn’t as a child, and I’m not much better as a 76-year-old man. Research, over the years, has shown that there could be a connection between my meals and my multiple sclerosis (MS). Now, a new study, by researchers at the Yale School of Medicine, adds more weight to that possibility.
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Mar 17, 2025 | 
multiplesclerosisnewstoday.com | Leigh Nelson |Ed Tobias |Mary M. Chapman
I flew to Detroit for work this month, then on to Phoenix to see my parents, and then back home to Kansas City, Missouri. But traveling by airplane has gotten more complicated for me because of my multiple sclerosis (MS). I don’t need assistive devices, so I know my situation could be significantly more difficult, and for that, I’m thankful. In light of those complications, though, I’ve changed my preparation and in-flight activities to make the experience more manageable.
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Mar 3, 2025 | 
rarediseaseadvisor.com | Ed Tobias
I usually get 7 or 8 hours of sleep each night but never wake up refreshed; it’s a multiple sclerosis (MS) thing. And I’ve been living with it for decades. The National Multiple Sclerosis Society reports that about 80% of people with MS experience fatigue that is different from that of a healthy person. It may last longer, gets worse as the day goes on, and needs more recovery time. We may nap in mid-day or fall asleep watching the 6 o’clock news.
