What it’s like to live with multiple sclerosis: 10 things you need to know about MS

There are a lot of misconceptions about multiple sclerosis, and to mark Multiple Sclerosis Awareness Week we outline 10 important MS facts.WomanMore than 100,000 people in the UK have multiple sclerosis, yet few of those who are lucky enough not to have it are aware of the truths about the debilitating illness.

  • To mark Multiple Sclerosis Awareness Week (April 25-May 1), here are 10 things you should know about this surprisingly common neurological condition:

    1. It’s a lifelong condition

    The MS Trust explains multiple sclerosis (MS) is a lifelong condition affecting the central nervous system (the brain and spinal cord), but it’s not terminal, contagious or inherited, although family members do have a slightly higher risk of getting it.

    2. There are lots of symptoms

    Nobody will have exactly the same range and severity of MS symptoms – they can vary greatly in their impact, and some people may have lengthy relapses.

    The first signs of MS will correspond to the affected area(s) of the brain and/or spinal cord, and may include fatigue, stumbling, pins and needles or numbness, slowed thinking and sight problems.

    As the disease progresses, more symptoms can develop, including dizziness, poor balance, bowel problems, stiffness, speech difficulties, tremors and emotional and memory problems.

    3. The cause remains a mystery

    It’s thought to be an auto-immune disease, where the immune system attacks myelin, the fatty protein that covers nerves in the central nervous system.

    Why this happens is unknown, but it’s thought that genes may lead to MS being triggered by an environmental factor, possibly an infection.

    [Related story: Lack of vitamin D ‘could be a direct cause of multiple sclerosis’]

    4. It is usually diagnosed in your 20s and 30s

    It can still occur in both younger and older people though. They will, on average, live with the condition for 40 to 50 years, typically until their mid-70s…

    5. Weaker immune system

    People very severely affected by MS may get more infections, or develop additional health conditions more easily than others and they may die from these.

    6. There are four types

    Relapsing remitting (RRMS) is where people have distinct attacks which then fade away, either partially or completely. Around 85% of people with MS have this type.

    Secondary progressive (SPMS) features a sustained build-up of disability, completely independent of relapses. Many people with RRMS go on to have SPMS

    Primary progressive (PPMS) affects 10-15% of people diagnosed with MS. Symptoms gradually get worse over time.

    Benign MS is a version of RRMS with very mild attacks separated by long periods with no symptoms.

    7. More common in women

    Around two to three women have MS for every man that has it.

    [Related story: 0 Comments]

    8. There’s no cure

    The majority of treatments involve managing specific symptoms.

    People who relapse may be given corticosteroids, which can help speed up recovery.

    Disease modifying drugs may be given to people with RRMS, to reduce the number of relapses and their severity.

    9. It’s more common in countries further north or south of the Equator

    The fact that MS is most prevalent in northern Europe, North America, Australia and New Zealand has prompted theories that it’s been carried around the world by European colonists and settlers.

    10. It’s not necessarily disabling

    Most people with MS will never need to use a wheelchair regularly.

     

Source: http://home.bt.com/lifestyle/wellbeing/what-its-like-to-live-with-multiple-sclerosis-10-things-you-need-to-know-about-ms-11364055103781

At-home cognitive remediation may help cognitive symptoms in multiple sclerosis

Cognitive impairment is one of the core symptoms of multiple sclerosis (MS)—and one of its most troubling concerns for many people with the condition. Now, a new study from NYU Langone Medical Center may provide hope for symptomatic relief for some of the cognitive issues associated with the neurological disease.
multiple sclerosis

In a randomized controlled trial, people with MS who used a computer-based cognitive remediation training program at home for 12 weeks had significantly higher cognitive test scores than those who used a placebo computer program. The new research was presented April 17 at the American Academy of Neurology’s 68th Annual Meeting in Vancouver.

“This trial demonstrates that computer-based cognitive remediation accessed from home can be effective in improving cognitive symptoms for individuals with MS,” says lead study author Leigh Charvet, PhD, an associate professor in the Department of Neurology, and director of MS Research at NYU Langone’s Multiple Sclerosis Comprehensive Care Center. “The remote delivery of an at-home test and findings of cognitive benefit may also be generalizable to other neurological conditions in which cognitive function is compromised.”

Cognitive problems in MS may impact memory, attention and concentration, information processing, verbal fluency and executive functioning, according to the National Multiple Sclerosis Society. Problems people with MS may experience include difficulty finding the right words and keeping up in conversations, or trouble remembering routines at home or work. These changes may be linked to atrophy and volume loss in the brain’s grey matter, according to the researchers.

Previous studies showed that cognitive remediation—or training programs to reverse cognitive declines, offer potential benefits for people with MS. But, to ensure maximum benefit, many of these programs require in-person treatment sessions in an outpatient setting multiple times a week for at least an hour. This can prove difficult for those with MS who are not able to take time off from jobs, or those with disease-associated disability who cannot easily get to a physician’s office.

To test the efficacy of an at-home cognitive remediation treatment intervention, 135 people with MS who were experiencing cognitive problems were randomized to receive either the active, computerized training program (71 participants) or a placebo program with ordinary computer games (64 participants).

The cognitive remediation training program used in the study was a research version of Posit Science’s Brain HQ, in which patients are instructed to play a series of games and tasks. Participants in both groups were asked to train for one hour per day, five days a week for 12 weeks. Technical support and weekly coaching sessions were provided by a study technician.

People with MS who engaged in cognitive remediation through Brain HQ improved 29 percent on neuropsychological tests, compared to 15 percent improvement for those in the placebo group. While improvement was noted across a range of specific cognitive measures in the active group, there were no improvements measured in activities of daily living.

The researchers also argue that the program’s superiority over the placebo group was clear, and the active group in the study probably would have had even greater gains had they been as compliant in the study as the placebo group, which engaged with the computer program on average 19 hours more than their study counterparts.

“Many patients with MS don’t have the time or resources to get to the clinic several times a week for cognitive remediation, and this research shows remotely- supervised cognitive training can be successfully provided to individuals with MS from home,” says senior study author Lauren B. Krupp, MD, professor of neurology and director of the Multiple Sclerosis Comprehensive Care Center. “Future studies will look at which patients with MS might respond most to cognitive remediation, and whether these improvements can be enhanced or sustained over longer periods of time.”

Notre Dame’s David Cowell overcomes cerebral palsy to compete

A late afternoon breeze brushes lightly through the campus as Notre Dame High School athletes begin fanning out to stretch before splitting into smaller groups to practice their individual events. Sprinters lift their knees high and distance runners jog lightly along the gravel pathway that surrounds the school’s football field, stopping to bend and touch their toes or twist their backs to loosen tight muscles.

Standing off just a bit from the others, David Cowell begins his own unique warm-up routine. Born with cerebral palsy, David is physically unable to do many of the same exercises as his track and field teammates, but much as he has throughout his life the freshman has adapted to ensure that while he may have to follow a slightly different path, he will be able to join other kids his age in competing.

His first sport as a child was taekwondo, and to prepare both his upper and lower body to throw the 12-pound shot, David stretches his muscles by thrusting his arms and legs out slowly in a series of punches and kicks against the air. That calls to mind the scene from the movie “Remember the Titans” when the new California quarterback “Sunshine” stands on the school lawn practicing tai chi.

“The first time I saw him going through his routine I thought, ‘What the heck is this kid doing?'” said Notre Dame assistant track coach Curt Jones. “Then I realized that he had figured out his own dynamic warm-up to get his body ready for practice.

“He knew he couldn’t do what the other kids were doing, but he wasn’t going to let his physical limitations prevent him from being a competitor. He’ll never stop trying, and that’s why he’s an inspiration for our entire team.”

Athletes were David’s heroes growing up, and by the time he was in middle school he wanted to find a team sport in which he could compete, something beyond taekwondo so he could feel more a part of a group.

Last year, as an eighth-grader at OLPH, he was introduced to the shot put event. After a year of learning it, once he transitioned to Notre Dame, he saw it as a way to help him establish an identity at a new school and, most importantly for a teenager, to fit in with his peers.

“I didn’t want to be known as that strange kid who walked around weird,” David said. “Once I started to compete, being a part of the track team has really helped me be accepted. I’m a part of something and now nobody can say that I’m not an athlete or that I can’t play. My teammates see how hard I try and they know if I get knocked down, I’m going to get back up and keep trying.”

When he was only 10 months old, David was diagnosed with spastic triplegia cerebral palsy, which means three limbs (both legs and his left arm) are affected by the disease. His vision and depth perception were also weakened, and his most recent surgeries were to insert corrective plates in both knees.

Before he could even walk or understand the hurdles he would face, life had dealt David a tough hand. But two months later things took a turn for the better when Jim and Michelle Cowell adopted him.

“We had struggled ourselves through three miscarriages,” said Michelle, now Zickafoose. “Once we decided to adopt and found out about David, we were told during the process that he may never walk and could possibly even be mentally retarded. That was a little nerve-racking to hear.

“But once I saw him, and he was such a smiley, happy baby, I knew right away that I wanted to be his mom. And within the first couple of months we knew he wasn’t going to have any mental limitations. Even as a baby he already showed signs of being very bright, and he’s proven that now by making all A’s and B’s in school and being a really sharp kid. It’s truly amazing what loving a child and not setting limitations on them can do.”

Though now divorced, Michelle and Jim both remain very involved in raising their son. As former athletes themselves, they have encouraged David to find ways of challenging himself physically.

By the time David was in the first grade he had taken six painful rounds of botox injections in his legs to loosen the muscles so that, through physical therapy, he could strengthen his legs. He also had undergone eye surgery to correct the crossed eyes caused by his disease and has undergone spinal surgery followed by countless rounds of physical therapy — two or three per week for several years. Although agonizing at the time, those procedures have helped David reach a point where his upper body now has few limitations and his lower extremities allow him to walk without the aid of crutches, although his weakened balance still causes him to fall often.

Although he’s never broken a bone, David has had plenty of bruises and scraped-off layers of skin from falling but admits the worst affect of his slips is the embarrassment.

His weakened balance and tendency to fall also made him an easy target for some mean-spirited peers when he was younger.

“Kids can be cruel,” Michelle said. “He was bullied a lot. It’s unbelievable how mean some kids can be, but when they figured out he was vulnerable, he would get pushed down and laughed at and made to feel different when he was younger. He went to counseling, but I really think sports and being a part of a team has done more to boost his self-confidence than anything else.

“People see how hard he tries and works at being an athlete, and they respect it. It might not be as pretty as some other athletes, but they see how he pushes himself. Now, whenever he falls, he has instructed me not to help him up. He wants to do it all on his own. He’s very independent, and I think a lot of that comes from just his desire to prove that he’s tough and that he’s like any other kid.”

All Notre Dame athletes began conditioning in early January, but David was the only one to make it to all 15 days of workouts. When the track team began running hills for conditioning, Coach Jones told David he could find an alternative exercise.

“He looked at me like he was really ticked off and said, ‘What do you mean?'” Jones said with a laugh. “He ran the hills. And later, after he had fallen in the gravel and skinned himself up pretty good, I went back out and saw him all bandaged up and running with some of the other kids.”

Between his first varsity throw and his next competition, David improved his personal-best throw by more than five feet. He threw the shot 17.6 feet at his team’s last meet and his coaches remember only once that they’ve had to encourage him.

“There was a day that I stopped running at practice and was kind of moping and Coach Jones could tell something was bothering me,” David said. “I was feeling sorry for myself and told him that I was always going to finish last at every competition no matter how hard I tried. But he just looked at me and said, ‘So is that going to stop you from competing?’ It was exactly what I needed to hear, and I knew I had to get back to work.”

When reminded of that day, Jones just shook his head and said, “You see him limping and dragging his feet and every time he reaches down to pick up the shot you think he’s going to fall, so you hold your breath. Just for him to be out there takes more guts than just about any kid I’ve known.

“When our other kids see him doing extra things to get better, it makes them want to work extra hard, too. How can they complain about anything we ask them to do when they see David giving every bit of extra effort he has? There’s no quit in David. The kid is fearless.”

Theater Critic With Cerebral Palsy Hopes To Appear On Broadway Himself

NEW YORK (CBSNewYork) — A young man with cerebral palsy is not letting his physical limits hold him back when it comes to his dreams.

CBS2 first introduced you to Thomas Ellenson in 2004 when he was in kindergarten. He is now 18 years old, and Cindy Hsu reports he will blow you away.

Ellenson is now in high school, and his first love is acting. He is able to say his lines through a program called Total Talk.

Using the program, Ellenson explained that cerebral palsy is an injury to the brain.

“I didn’t have enough oxygen when I was born,” he said.

While Ellenson has limited movement and speech, cognitively he’s just like any other teenager. He types his words into this machine, which is then able to give those words sound.

Ellenson dreams of acting on Broadway.

“I’m writing my own one man show, because I know people might not hire me otherwise,” he said.

The play is about Ellenson’s life, and it has a message.

“I want people to learn that people with disabilities are normal; see me, not CP,” he said.

Ellenson loves Broadway so much that he has a review website calledTheateriffic.

“I focus on the good in shows,” he said, “because people work really hard on them.”

Ellenson can’t even remember how many shows he’s attended. One of his best friends is actor Christopher Hanke, who has been in four Broadway shows.

“If he wants to be on Broadway, he should be on Broadway,” Hanke said. “He has to fight, and if he fights hard enough, he can do it.”

Desiree Valdez is another dear friend. They met four years ago in an acting program, and while they’re now inseparable, Valdez remembers when they first met.

“I was like, oh my goodness, how am I going to do this? How are we going to make scenes? Can he talk? I mean how does it work?” Valdez said.

But of course, it has worked just fine.

Hsu asked Ellenson how he feels when he’s on stage acting. He said he feels free.

He said his favorite Broadway show is “Fun Home,” the musical adapted from cartoonist Alison Bechdel’s graphic memoir. Ellenson said it is really deep, but also funny.

Ellenson also pointed out that “Fun Home,” with music by Jeanine Tesori and lyrics and book by Lisa Kron, is the product of the first all-female team that wrote everything.

Sony made a custom PS4 controller for a gamer with cerebral palsy

It’s tough to use gadgets when you have cerebral palsy — few of their interfaces take the movement disorder into account. However, a Sony staffer went the extra mile to make sure this wasn’t a problem for one gamer. When Peter Byrne wrote Sony complaining that the DualShock 4’stouchpad was difficult to use with his cerebral palsy (he’d inadvertently hit the pad and pause the game), the company’s Alex Nawabi made him a custom version of the official PS4 gamepad. The modified controller, which took 10 hours to make, disables the touchpad and uses another button to fulfill that role.

It’s an extremely kind gesture by itself, but it gets better: Nawabi built a second controller just in case the first one breaks, so Byrne likely won’t have to worry about asking for another favor. While this isn’t the same as a full-fledged production model, it shows that it’s possible to accommodate gamers’ special needs with relatively little effort.

 

Source: http://www.engadget.com/2016/04/04/ps4-controller-for-cerebral-palsy-gamer/

Where You Live Could Be a Risk Factor for Multiple Sclerosis

Researchers say developed countries with better sanitation seem to have more cases of multiple sclerosis than other places.
ms and environment

It turns out immigration may increase the risk of developing multiple sclerosis.

That’s what a research team led by Queen Mary University of London and Barts Health NHS Trust concluded.

Environmental factors may be more involved in increasing the chances of developing multiple sclerosis (MS) than previously thought, according to the team led by Dr. Klaus Schmierer, Ph.D., FRCP.

Schmierer is a reader in clinical neurology at Blizard Institute, Queen Mary University of London, as well as a consultant neurologist at the Royal London Hospital (Barts Health NHS Trust).

Read More: Early Signs of Multiple Sclerosis »

Immigrating to London

Schmierer’s study focused on east London, where he found that black residents and those from South Asia had a higher prevalence of MS compared with the same groups living in their ancestral countries.

Researchers say these findings suggest an environmental influence on developing the disease, which is yet undetermined.

“My team recognized we work in one of the ethnically most diverse parts of the U.K. With its small catchment/high population density, east London lends itself to investigate the impact of migration from territories of very low MS prevalence to the U.K., where MS prevalence is very high,” Schmierer said in an interview with Healthline.

ms and environment

Both genetic and environmental factors are thought to contribute to developing MS, but the cause is still unknown.

MS is a neurodegenerative disease of the central nervous system, and the most common chronic, nontraumatic cause of disability in young adults.

There is no cure, although there are treatments that may reduce the frequency and seriousness of attacks.

According to Dr. Nicholas LaRocca, vice president of healthcare delivery and policy research for the National Multiple Sclerosis Society, the east London study is one of a number that examine population groups and the rates of diagnosis of MS.

“This is an exciting time in MS research,” he said.

LaRocca noted that earlier in his career, before the introduction of treatment with interferon in the 1990s, options for MS patients were limited.

Read More: Brain Cell Death May Cause Multiple Sclerosis »

Geography Matters

Schmierer found in his study that the number of occurrences of MS based on geography is significant.

For example, in Ghana the incidence of MS was 0.24 per 100,000 people, the highest in sub-Saharan Africa. The prevalence of MS in the east London population was 74 per 100,000 people.

“The magnitude of this effect in our dataset is stunning,” he said. “Whilst Mendelian genetics may influence the disease course once MS is established, the risk of actually getting the disease seems only weakly influenced by genetics. Note, however, X/Y chromosomes do play an important role in MS risk, with women being two to three times more frequently affected than men.”

If you look at a map of the world, you’ll see that the risk increases as you move farther away from the equator.
Dr. Nicholas LaRocca, National Multiple Sclerosis Society

LaRocca told Healthline that gender is also being studied, citing the fact that women with MS rarely have serious outbreaks during the last trimester of pregnancy.

“Is there a hormonal component here?” he asked.

“If you look at a map of the world,” he added, “you’ll see that the risk increases as you move farther away from the Equator.”

In other words, developed countries,“ and ones with better sanitation,” LaRocca added, have a higher prevalence of MS. That raises the question of whether we are too rigorous in killing microorganisms, both good and bad.

“We know that as sanitation improves, so does the risk of contracting MS,” LaRocca said.

Read More: Stem Cell Treatment Shows Promise for Multiple Sclerosis »

Further Studies Needed

The Schmierer study, published in the Multiple Sclerosis Journal, used electronic records from general practices in four east London boroughs.

Local doctors were asked for the number of their patients diagnosed with MS, grouped by ethnicity.

A total of 907,151 patients were registered with doctors in east London. Of that number, 776 had a diagnosis of MS. The overall prevalence of the disease in east London was 111 per 100,000 (152 for women and 70 for men). The prevalence per 100,000 was 180 for whites, 74 for blacks, and 29 for people from South Asian.

The research team plans further investigation to determine what environmental agents might provide an explanation for the higher figures found in the development of MS in the United Kingdom.

Replicating our results in other parts of the country where a significant number of immigrants from low prevalence countries/territories have settled would bolster our case further.
Dr. Klaus Schmierer, Queen Mary University of London

In the meantime, Schmierer cautions against reading too much into his study, noting the findings apply only in east London and must be replicated in other areas.

“Replicating our results in other parts of the country where a significant number of immigrants from low prevalence countries/territories have settled would bolster our case further that the focus must be on the definition, and potential to alter, the environmental factors leading to such a step-change in the risk of getting MS,” he said.

But he does suggest that the results, however preliminary, need to be noted by general practitioners as well as specialists, who frequently do not include MS in their diagnoses. That assumption is based on the low risk of MS in blacks and South Asians when living in their ancestral territories.

Queensland Aldi cashier says cerebral palsy boy ‘better off dead’

An Aldi cashier’s comment that a boy with cerebral palsy would be “better off dead” was nowhere near as bad as the company’s response, his father said.

Queensland father Howard Duggan said the incident was the latest example of corporate Australia’s shameful handling of disability issues and he was using social and mainstream media to push for change.

Renee Duggan and her son Andrew.

Renee Duggan and her son Andrew.
Renee Duggan and her son Andrew. Photo: Supplied
His wife, Renée, was shopping at the German chain’s Oxley store in Brisbane’s south on March 26 when she approached the checkout with her 12-year-old son, Andrew.

Mrs Duggan said she walked up to the lady at the register, who looked at her son and said “people like him are better off dead”.

“I was shocked,” she said.

“I didn’t really know what to say except to defend my son and explain that my son was happy and that he had a power chair and he had a walker and he was, you know, happy.

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“She just came out and told me that her child had died and she was happy with that.”

The woman allegedly said: “I had a baby born early and it died; it’s better that way”.

Mr Duggan said he didn’t have a problem with the cashier, saying she probably didn’t know what she was saying was wrong.

“I can forgive the initial incident,” he said.

“The problem comes in the second wave, when it’s over to management, who were given every opportunity to fix this up.”

Mr Duggan said his wife spoke to a trainee manager, who promised the store manager would be in touch three days later, the day after Easter Monday.

The media company director, who said he was taking the issue public to force Aldi and other major companies to better address disability issues, said an area manager’s attempts to deal with the situation didn’t help things.

He said the company refused his request to speak to the state manager and delayed acting unnecessarily long, slamming the response as “weak, unnecessarily defensive, antagonistic, short-sighted, passive aggressive, disability issue-illiterate”.

An Aldi Australia spokeswoman said the company took the incident “extremely seriously”.

We would like to apologise to the Duggan family for the delay in responding to this incident,” she said.

“Unfortunately the holiday period impacted on our responsiveness and we are reviewing procedures to ensure this doesn’t happen again.

“Our regional area manager has since been in contact with the family on a number of occasions.”

Mr Duggan pointed to a recent disability issue at a Brisbane JB Hi-Fi store and regular reports of airlines making disability access mistakes as a sign of a wider problem.

“This is corporate Australia’s shame, that because they are so protective, they give the minimum chips and they will do nothing else until there’s another way that obliges them to do more.

“Very few of them get it right the first time and go above and beyond.

Mr Duggan said he didn’t want Aldi or “the next corporate taking a passing interest” to think they had averted the issue.

“I want them to think, ‘Jeez, we got hit by a bullet and this is why we got hit. And we don’t want to be in the frame again,” he said.

The Duggans hope to meet with Aldi Australia chief executive Tom Daunt privately.

Where You Live Could Be a Risk Factor for Multiple Sclerosis

Researchers say developed countries with better sanitation seem to have more cases of multiple sclerosis than other places.

040416_MS_Environment_THUMB_LAR

It turns out immigration may increase the risk of developing multiple sclerosis.

That’s what a research team led by Queen Mary University of London and Barts Health NHS Trust concluded.

Environmental factors may be more involved in increasing the chances of developing multiple sclerosis (MS) than previously thought, according to the team led by Dr. Klaus Schmierer, Ph.D., FRCP.

Schmierer is a reader in clinical neurology at Blizard Institute, Queen Mary University of London, as well as a consultant neurologist at the Royal London Hospital (Barts Health NHS Trust).

Immigrating to London

Schmierer’s study focused on east London, where he found that black residents and those from South Asia had a higher prevalence of MS compared with the same groups living in their ancestral countries.

Researchers say these findings suggest an environmental influence on developing the disease, which is yet undetermined.

“My team recognized we work in one of the ethnically most diverse parts of the U.K. With its small catchment/high population density, east London lends itself to investigate the impact of migration from territories of very low MS prevalence to the U.K., where MS prevalence is very high,” Schmierer said in an interview with Healthline.

ms and environment

Both genetic and environmental factors are thought to contribute to developing MS, but the cause is still unknown

MS is a neurodegenerative disease of the central nervous system, and the most common chronic, nontraumatic cause of disability in young adults.

There is no cure, although there are treatments that may reduce the frequency and seriousness of attacks.

According to Dr. Nicholas LaRocca, vice president of healthcare delivery and policy research for the National Multiple Sclerosis Society, the east London study is one of a number that examine population groups and the rates of diagnosis of MS.

“This is an exciting time in MS research,” he said.

LaRocca noted that earlier in his career, before the introduction of treatment with interferon in the 1990s, options for MS patients were limited.

Further Studies Needed

The Schmierer study, published in the Multiple Sclerosis Journal, used electronic records from general practices in four east London boroughs.

Local doctors were asked for the number of their patients diagnosed with MS, grouped by ethnicity.

A total of 907,151 patients were registered with doctors in east London. Of that number, 776 had a diagnosis of MS. The overall prevalence of the disease in east London was 111 per 100,000 (152 for women and 70 for men). The prevalence per 100,000 was 180 for whites, 74 for blacks, and 29 for people from South Asian.

The research team plans further investigation to determine what environmental agents might provide an explanation for the higher figures found in the development of MS in the United Kingdom.

In the meantime, Schmierer cautions against reading too much into his study, noting the findings apply only in east London and must be replicated in other areas.

“Replicating our results in other parts of the country where a significant number of immigrants from low prevalence countries/territories have settled would bolster our case further that the focus must be on the definition, and potential to alter, the environmental factors leading to such a step-change in the risk of getting MS,” he said.

But he does suggest that the results, however preliminary, need to be noted by general practitioners as well as specialists, who frequently do not include MS in their diagnoses. That assumption is based on the low risk of MS in blacks and South Asians when living in their ancestral territories.

More Insurance Companies Now Paying for Fibromyalgia Blood Test.

Do you himagesave a family member, friend or physician who doubts you have fibromyalgia? Well, there’s a little-known test you may not have heard of that could finally prove you’re really sick.

In 2013, Los Angeles-based biomedical company EpicGenetics made international headlines when it introduced FM/a, the first ever fibromyalgia blood test.

While FM/a hasn’t caught on in most doctors’ offices, more insurance companies are now paying for the test. FM/a is covered by most Medicare plans. Private insurers, such as Blue Cross Blue Shield, UnitedHealthcare and Aetna, also are starting to pay for the test on a case-by-case basis.

The test’s steep price tag – $794 – has been a deterrent for patients, many of whom are already living on fixed incomes because they’re unable to work due to poor health.

EpicGenetics is trying to make it easier for patients to afford the test by providing free assistance with insurance processing. The company’s insurance processing department contacts insurance companies on the patients’ behalf to find out if the test is covered and what the cost would be to the patient.

(A six-installment, no interest payment plan is available for people who are uninsured or whose insurance won’t cover the test.)

Dr. Bruce Gillis, EpicGenetics’ CEO, says the No. 1 reason patients get the test is to prove to family members and others that they are really sick.

He believes physician bias is the main reason why the test is not more widely used.

“The majority of physicians do not believe that fibromyalgia is real, so they haven’t kept up with the advances that have occurred, including reading something as simple as WebMD, which tells everyone the test exists,” he says. “In under 10 seconds, a Google search reveals the test.”

Many physicians don’t consider fibromyalgia to be a disease; they believe it’s a collection of symptoms and lump it into the “syndrome” category.

And then there’s another group of physicians who don’t believe fibromyalgia exists at all. Patients are routinely told they’re “depressed” or “getting older” – or worst still, the pain, fatigue, brain fog and other debilitating symptoms are all in their heads.

The legitimacy of fibromyalgia has been complicated for decades because of the lack of a diagnostic test to prove its existence. It’s typically a diagnosis of exclusion – meaning illnesses with similar symptoms have been ruled out through extensive (i.e. often expensive) medical testing.

According to EpicGenetics, patients can spend between $10,000 and $42,500 on diagnostic tests leading up to their fibromyalgia diagnosis. That’s a lot of money, and that’s another reason why physicians haven’t embraced the FM/a test, Gillis says.

“Many rheumatologists prefer to offer patients rule-out tests, which they can perform in their office labs, thereby making for a financial incentive to follow that route,” he explains.

A licensed healthcare professional must order the test for the patient. The test requires a simple blood draw, and results are available within five to seven days. It has a sensitivity of 93 percent – equivalent to the blood test for HIV. (No test has a sensitivity of 100 percent.)

Gillis admits he used to be one of those physicians who doubted the existence of fibromyalgia, but the results of EpicGenetics’ research studies have made him a believer.

EpicGenetics focuses on developing diagnostic tests where none currently exist. When Gillis was asked to look at fibromyalgia, he and researchers from the University of Illinois College of Medicine in Chicago theorized that fibromyalgia’s mishmash of symptoms might be caused by a malfunctioning immune system.

The first study looked at a series of immune system biomarkers in 17 patients with fibromyalgia and 17 healthy people, and the results were striking. Researchers found several biomarker abnormalities among the fibromyalgia patients, leading Gillis to conclude fibro symptoms are somehow associated with a suppressed immune system.

“We believe [the term] fibromyalgia is a misnomer,” he says. “These people aren’t suffering with anything that’s affecting the muscles, per say. What they are suffering with is their immune system cannot product normal quantities of protective proteins. …There are cells in the immune system called peripheral blood mononuclear cells. They are not producing normal quantities of the protective proteins called chemokines and cytokines.”

The test focuses on four chemokines and cytokines, which are found at reduced levels in fibromyalgia patients, according to Gillis.

Two subsequent studies, one of which compared fibromyalgia patients to those with rheumatoid arthritis and lupus, supported the results of the initial study, Gillis says.

“These people [with fibromyalgia] have immune system dysfunction,” he says. “These people are really sick. It’s not in their head. … Why aren’t the drug companies knocking down our door to develop a treatment?”

EpicGenetics’ research and the FM/a test aren’t without critics. Fibromyalgia expert Dr. Daniel Clauw has said EpicGenetics’ studies contradict other research, which has shown normal or elevated cytokine levels in fibromyalgia sufferers.

Researcher and rheumatologist Dr. Fred Wolfe called one of EpicGenetics’ studies “junk science,” saying it didn’t meet minimal scientific standards.

But in 2012, the American Association for Clinical Chemistry gave EpicGenetics an award for outstanding research in clinical and diagnostic immunology for its fibromyalgia research, says Gillis.

He believes there’s a darker reason why Wolfe has been outspoken about the FM/a test: Wolfe has previously received research funding from Pfizer, which makes Lyrica, one of three drugs approved in the U.S. to treat fibromyalgia and one of the most profitable pharmaceuticals in the world.

If it was proven that fibromyalgia patients actually have a malfunctioning immune system, then what sense would it make to treat that with an anti-seizure medication? Pfizer and other pharmaceutical companies that make fibromyalgia drugs would lose billions.

EpicGenetics isn’t letting the doubters keep them from moving forward. In the future, Gillis said the company would like to study the DNA of fibromyalgia sufferers to see if a genetic component can be identified. Proceeds from the FM/a test are being funneled toward that effort.

Click here for more information on the FM/a test.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

Schizophrenia DNA study will leads medical breakthrough – Phoenix Daily Health

 

 

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For a long time scientists have to fight around the reason for the development of schizophrenia, a complex psychiatric disorder, and the way to understand the treatment.

People with schizophrenia – more than 21 million worldwide

Scientists at Harvard University and the Broad Institute examined the genomes of 64,785 people around the world and found that those who were with the debilitating psychiatric disorders more likely to have mutations in a common gene, according to published this Wednesday findings.

People with schizophrenia – more than 21 million worldwide – generally have less gray matter and fewer connections in their brains than healthy peers. But scientists are not sure why. The research, which for the first time, suggests that changes in a gene called complement component 4 or C4, in short, could be important. The gene was previously known to help the immune system to target infections.

The study shows the possible reasons is that the symptoms of schizophrenia of not less than 3.5 million Americans trigger of 1% of the population. Schizophrenia symptoms such as hallucinations, cognitive difficulties, hallucinations and abnormal social behavior changed. However, psychiatrists have been mystified about its origins and biological bases. “The basic scientific dilemma in schizophrenia and in all mental illness is that we do not even the most basic things about how these diseases start known,” said Dr. Steve McCarroll, a geneticist at Harvard University and one of the authors of the study.

What is the reason of schizophrenia so difficult?

We knew about the area for a long time on the basis of genetic-association studies. But there are a lot of genes are, and no one had identified gene as a risk before explaining. When [co-author] Steve [McCarroll] came to me with preliminary data to support the genetic link with C4, I was very excited because my lab was to investigate the role of other immune proteins of the development brain, especially synaptic pruning. We had some progress in understanding which proteins are in normal development. And since schizophrenia is thought to be a disease of the nervous system, which is really exciting. By demonstrating that there are some synaptic loss led to the hypothesis that maybe this genetic link could be related to crop. We were also fortunate in a third laboratory, Michael Carroll, the immunologist who has been studying C4 bring. So in order to progress as to make this really a question, it needs this kind of an interdisciplinary approach.

healthy synapse pruning and?

We know that it is necessary for circumcision developing mouse brain. But we do not know [about his role in the people], as we know, for the mouse.

With the participation of the immune system in this synapse pruning schizophrenia can be classified as an autoimmune disease?

No, this is not an autoimmune. What this shows us that a gene to be that happens, an immune system gene is involved. The last decade has shown that there are a lot of immune genes, which are expressed in the normal, healthy brain. They are repurposed in the brain to do important things in the development especially. We have evidence that this play a gene and a path that is expressed in the brain, and is a normal role in the brain.

or the purpose of the study researchers came together from all over the United States and studied the role of genetics and their influence on the individual chance of developing the disease. In the process, they isolated a particular gene that prompts the symptoms. According to their research, the people who have a gene that accelerated the normal development process “synaptic pruning” in their brains are at high risk of developing schizophrenia. When people suffer from schizophrenia, is their process of synaptic pruning in an overdrive condition, which means that they. Fewer connections with the prefrontal cortex, especially during adolescence and young adulthood, which led to the development in disorder

In particular, they say, this happens during adolescence and early symptoms of schizophrenia that are less well known, manifest, for example, memory loss and problems with attention, marked withdrawal from personal relationships and a severe lack of motivation. This is consistent with previous research that had identified this “pruning” as possible perpetrators.

For those who do research in schizophrenia have followed for a while now, this may have been expected. Previous research has suggested that late adolescence appears to be a window, may result in the early symptoms of schizophrenia. Taking certain medications during adolescence has also been linked to schizophrenia-like symptoms in later life associated. Although controversial, it may be that the mechanism in the game there is the same: The trimming function in the brain can go too far and create a breakdown in how the brain perceives and processes the data of our senses are giving it.

So why is this important? Due to the fact that schizophrenia often present with very different and far-reaching symptoms, looking for treatments that can fight all of them without significant side effects is difficult. Significantly improved However, this research suggests that there may be a way, if not avoided, schizophrenia, then eliminates targeted treatment for the cause, the patient’s outlook and contribute in particular to control psychosis effective.