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Each week, approximately 200 people are diagnosed with Multiple sclerosis, or MS, a chronic disease often striking people in the prime of their lives. MS has been thrust into the spotlight recently as newinnovative therapies have become available to patients with relapsing forms of MS.
Neurologist Dr. Jeffrey English spoke with Sunrise 7's Sean Caldwell to explain how MS has gone from an essentially untreatable disease to one with multiple medications available in less than two decades.
By RICK NAUERT PHDSenior News Editor Reviewed by John M. Grohol, Psy.D. on June 26, 2013
An international team of researchers from the U.S. and Italy have found that differences in some of the brain’s physical characteristics and in how individuals utilize the brain each can protect against cognitive decline in multiple sclerosis.
The research effort sought to discover why some individuals with MS experience significant cognitive decline while others may experience considerable disease progression without cognitive decline.
The study looked at what is termed “brain reserve” — usually defined as maximum brain volume and number of neurons, both primarily inherited characteristics. Cognitive reserve, on the other hand, is sometimes thought of as the “software” to the physical brain’s “hardware,” and has to do with optimally putting the brain’s resources to work through life experiences such as education and challenging work and leisure.
“Our research interests focus on why many people with MS suffer cognitive impairment, while others with MS withstand considerable disease progression without cognitive decline,” said study co-author John DeLuca, Ph.D.
“With our colleagues in Milan, we explore factors associated with lack of cognitive decline despite marked changes on imaging studies.”
In this study, 62 patients with MS (41 relapsing-remitting MS, 21 secondary progressive MS) had MRIs to estimate brain reserve and disease burden. Early-life cognitive leisure was measured as a source of cognitive reserve.
Cognitive status was measured with tasks of cognitive efficiency and memory.
James Sumowski, Ph.D., principal author on the study, said, “We demonstrated for the first time that larger maximal lifetime brain growth (which is heritable) and early life mental stimulation (e.g., reading, games, hobbies) independently and differentially protect against cognitive decline in MS.
“That is, genetics and life experience independently protect against cognitive decline in persons with MS.”
The finding that intellectual enrichment conveys a protective effect in MS has been suggested in early research.
The research is published in the journal Neurology.
I think we have all dealt with people making comments, or just doing something that is bothersome to us, when discussing our MS… or if it gets brought up at random… I’ve had some people tell me that I talk about my MS too much. Well, this was when I was first diagnosed and I was going through a LOT of changes, how could I NOT talk about MS a lot? But as time went on, and when I was having discussions with family, friends and sometimes-just acquaintances, there were things said or done that really bothered me and I had to bite my tongue and just nod and let it roll off my shoulder. So, just to vent, and hopefully provide something useful for others to consider when speaking to someone with MS, I’ve made a list of things that should NOT be said to someone with multiple sclerosis.
You don’t look sick
You shouldn’t drink diet coke
OMG this diet cures MS
OMG this vitamin will leave you symptom free
Aren’t you gluten free? … You should be
Aren’t you too healthy looking to have MS
Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS
Well aren’t you taking your meds?? (Yes….) Then why is your MS bothering you still?
Are you contagious?
You shouldn’t eat meat…
What did you do to get MS?
How DID you get that? You must’ve had mono
If the heat bothers you, don’t be in it… or move…
I heard a vaccine caused it
Can’t you just walk slower?
Why are you dragging one of your feet?
Why are you always so tired? It can’t be that bad…
Well if you’re in remission, why are you on meds?
If pregnancy makes it better, why don’t you just keep having more kids!
That celebrity with MS seems just fine, why aren’t you?
Do you take enough vitamins? Are you sure it’s MS…? How can doctors be so sure?
Stop using MS as an excuse… you can’t feel that way ALL the time.
Maybe you just need to try a little harder.
Why don’t you try a different medication, that doesn’t cause so many side effects?
You seemed fine the other day…
You slept ALL night, how can you be so tired?
(This is for the younger MS’ers) WOW… you take more medicine than my grandma…
MS… isn’t that the muscle illness? (No. That’s MD = Muscular Dystrophy)
You daydream a lot in the middle of a conversation, that’s rude! (No… it’s cognitive issues)
Why do you keep forgetting things?
Oh TRUST me… I know exactly how you feel!
Oh, you should just exercise more…
It really can’t be that bad…
Oh… and when they compare how they feel or have felt in the past, with your symptoms… like it’s the EXACT same feeling…
Or when they just give you that “look”… you know the “real housewives” kind of look… nose in the air, scrunched up… Yeah that one…
I’ve come to learn that when some people (not all) ask how I’m doing… they are just doing it out of politeness… they don’t actually want to know how I’m felling, so I simply respond w/ the phrase we are ALL too familiar with… “I’m fine”
I could probably add to this list daily but I didn’t want to make the longest blog post in history! So while those of you are reading this that have MS are nodding your heads while you were reading, because you’ve been told the same thing before, I hope those that have a family member, friend or just an acquaintance with someone diagnosed with multiple sclerosis, take “the list” in to consideration. It’s not that we don’t enjoy people wanting to help out with their suggestions… sometimes it’s just nice to have support from individuals, and not their suggestions.
And I’ll just add this in there, this post is not meant to offend anyone or say that diet and exercise is something we don’t want to hear about… and that’s great if you’re on a specific diet that helps manage your MS… but I’ve heard too many times to count, “This certain diet will CURE your MS…” Well, the reason I disagree with that, is because I have a certain definition of the word “cure” when it comes to MS…
Cure for MS: Something that not only stops progression from happening in the future, but also reverses the damage that has already been done to my Central Nervous System. Even though stopping future progression is something we all strive for, we still have to live everyday with the symptoms that were caused by previous attacks.
June 24, 2013 — Scientists led by a UCSF neurology researcher are reporting that they have identified the likely genetic mechanism that causes some patients with multiple sclerosis (MS) to quickly progress to a debilitating stage of the disease while other patients progress much more slowly.
The team found that the absence of the gene Tob1 in CD4+ T cells, a type of immune cell, was the key to early onset of more serious disease in an animal model of MS.
Senior author Sergio Baranzini, PhD, a UCSF associate professor of neurology, said the finding may ultimately lead to the development of a test that predicts the course of MS in individual patients. Such a test could help physicians tailor personalized treatments, he said.
The study, done in collaboration with UCSF neurology researchers Scott Zamvil, MD, and Jorge Oksenberg, PhD, was published on June 24, 2013 in the Journal of Experimental Medicine.
MS is an inflammatory disease in which the protective myelin sheathing that coats nerve fibers in the brain and spinal cord is damaged and ultimately stripped away -- a process known as demyelination. During the highly variable course of the disease, a wide range of cognitive, debilitating and painful neurological symptoms can result.
In previously published work, Baranzini and his research team found that patients at an early stage of MS known as clinically isolated syndrome who expressed low amounts of Tob1 were more likely to exhibit further signs of disease activity -- a condition known as relapsing-remitting multiple sclerosis -- earlier than those who expressed normal levels of the gene.
The current study, according to Baranzini, had two goals: to recapitulate in an animal model what the researchers had observed in humans, and uncover the potential mechanism by which it occurs.
The authors were successful on both counts. They found that when an MS-like disease was induced in mice genetically engineered to be deficient in Tob1, the mice had significantly earlier onset compared with wild-type mice, and developed a more aggressive form of the disease.
Subsequent experiments revealed the probable cause: the absence of Tob1 in just CD4+ T cells. The scientists demonstrated this by transferring T cells lacking the Tob1 gene into mice that had no immune systems but had normal Tob1 in all other cells. They found that the mice developed earlier and more severe disease than mice that had normal Tob1 expression in all cells including CD4+.
"This shows that Tob1 only needs to be absent in this one type of immune cell in order to reproduce our initial observations in mice lacking Tob1 in all of their cells," said Baranzini.
Exotic fish could hold the key to the development of new treatments for diseases like multiple sclerosis, Scottish scientists claim.
A study into the nervous systems of exotic fish could offer insights into the disease which is caused by a breakdown of the vital nerve sheath, Myelin.
Researchers at the University of Edinburgh say they have uncovered ‘vital clues’ in the brains of zebrafish - tropical fish of the minnow family - about the way that organisms produce the fatty sheath that insulates and protects nerve fibres.
They say fresh insights gained from the study could help understanding of how the nervous system works.
Myelin is critical for allowing nerve impulses to be transmitted quickly, enabling the human body to carry out a range of everyday functions such as walking, speaking and seeing.
The scientists found that individual cells in the brain and central nervous system have only a very short time period in which to generate this protective coating.
It is the first time that scientists have been able to quantify the time frame, which is only a matter of hours.
They hope that the results of their studies may one day help the treatment of myelin-related conditions such as multiple sclerosis.
The researchers are now studying how manipulation of genes and the use of drugs might promote myelin formation in zebrafish.
Myelin - which is made by specialised cells called oligodendrocytes - is crucial for good health.
When myelin breaks down, and is not repaired properly, it can cause numbness, loss of vision and dizziness. It also leads to the debilitating symptoms of diseases such as MS.
MS (pictured) develops when the nerve sheath myelin breaks down. The research could fuel the development of new treatments
Although MS patients have an abundance of oligodendrocytes in their brains, these fail to produce sufficient myelin to bring about repair.
There’s a lot of talk about sleep these days,
everything from the effects of summer heat on our sleep patterns to how
veterans sleep after coming home. Just recently there were reports that Michael
Jackson went 60 days without real sleep.
Sleep and its impact on our lives is one of the
hottest topics on PatientsLikeMe (in fact, there have been more than 8,000
posts on the night owl forum thread). It’s one reason why,
over the next several months, PatientsLikeMe is going to be taking a deeper
look at your sleep experiences and how they affect your overall health. So, we
want to know – Are you sleeping? Keep an eye out for conversations about sleep
in the forums, insomnia topics in the newsletter and research surveys that will
help uncover more about sleep (or lack thereof). We’ll take a look at
everything you’re sharing over the next few months and tell you more about what
we’re seeing (stay tuned!) There are a lot of things that can impact our sleep,
so let’s get the conversation going and start catching some more zzzzz’s.
To kick things off, we did a quick
poll to see how we, your PatientsLikeMe Team, are sleeping. We asked our entire
staff questions like: “How many hours do you sleep each night?” and “What have
you tried to help you fall asleep?” and “Would you say you have insomnia?” The
answers might surprise you. Check it out.
Cheers to counting sheep,
The PatientsLikeMe Team
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