Multiple Sclerosis to Get Help from Clay Walker

Country singer Clay Walker will once again host his Chords of Hope event on June 6, 2017, in Nashville. The benefit concert supports his charity, Band Against MS, which is a personal passion for Walker, who was diagnosed with MS in 1996.  Donations raised fund research, education, and awareness for Multiple Sclerosis and go to Nashville’s MS Center at Vanderbilt Medical Center.

“This is our 8th year putting together Chords of Hope and every year the event and even the fans who come out and support keep getting better,” said Walker in a press release. “The amount of money that continues to get raised to help support research and education through BAMS and the MS Center at Vanderbilt is incredible and this night is truly a special one for me and for Music City!”

Band Aginst MS (also known as BAMS) has raised more $4.5 million and the Chords of Hope event has raised well over $200K — just for the MS Center at Vanderbilt Medical Center. Fans can purchase tickets here.

To learn more about Clay Walker and BAMS, visit www.claywalker.com and www.bandagainstms.org.

Watch one of Walker’s biggest hits, “Dreaming With My Eyes Open” from 1994.


Multiple Sclerosis: Doctors back unconventional treatment

Two doctors who were previously diagnosed with Multiple Sclerosis (MS) claim an unconventional treatment cleared them of the symptoms of the disease.

Key points:

  • MS is the most common disabling disease in young adults
  • There is evidence of associations between MS, diet and other lifestyle factors
  • Professor Jelinek’s program uses exercise, meditation, low-fat diet and sun exposure to treat symptoms

They are among a growing number of MS patients who have made big lifestyle changes as part of a program, devised by Melbourne professor George Jelinek, which they say eliminated the symptoms of the disease that threatened to end their careers.

Sam Gartland’s future looked bleak when he was diagnosed with a relapsing remitting form of MS.

His symptoms were so severe he had to quit his job as an intensive care doctor.

“I couldn’t actually walk from the car park to the intensive care unit,” he said.

A decade later, Dr Gartland spends his mornings either kickboxing or surfing on the New South Wales central coast.

“I try and exercise every day,” he said.

“To the point where I’m sweating and my heart rate’s up.”

‘If this was a drug, by now everyone would be on it’

George Jelinek, founder of the Overcoming MS program

The Overcoming MS program:

  • Vegan plus fish diet
  • Sunshine – 15 minutes daily plus vitamin D3 supplements
  • Meditation – 30 minutes daily
  • Exercise – 20-30 minutes daily

MS remains the most common disabling disease among young adults. Eighty per cent of those diagnosed will be forced out of full-time work within 10 years.

The Jelinek program consists of a strict regimen of exercise, meditation, low-fat diet and sun exposure to combat the condition.

“If this was a drug, by now everyone would be on it,” Professor Jelinek said.

Professor Jelinek devised his Overcoming MS (OMS) program after being diagnosed with MS himself in 1999.

It now has thousands of proponents worldwide and almost 20 years later, he remains symptom free.

As a doctor, Sam Gartland says he was initially sceptical about the program.

“Even though I’d read George [Jelinek’s] book and the evidence seemed strong that this was largely a disease related to lifestyle factors, my training through medical school was very different,” he said.

“My experience of Multiple Sclerosis was of a relentlessly progressive condition and I couldn’t see how such a powerful disease would be affected by simple lifestyle changes. I struggled with that.”

Facing early retirement from his job as an intensive care doctor, Dr Gartland travelled to a retreat in the Yarra Valley hosted by Professor Jelinek.

“One of the key things, I think for me, was looking at meditation and finding clarity in my mind about what I needed to do to address this illness,” he said.

Dr Gartland began the OMS program in 2009 after experiencing three relapses in year and not working for 12 months.

By 2012 the lesions that threatened to cut short his career had disappeared.

As a result, one neurologist questioned whether he ever had the disease.

Like Professor Jelinek, Dr Gartland remains symptom free.

‘I could see myself confined to a wheelchair, or worse’

Dr Virginia Billson with her dog, Milly. 1997PHOTO: Dr Virginia Billson, with her dog Milly, when she was diagnosed with MS in 1997. (Supplied: Dr Virginia Billson)

Another devotee of OMS is Melbourne-based pathologist and Sceptic Society member Dr Virginia Billson.

She experienced double vision and an inability to speak after being diagnosed.

“I could see myself not being able to work, not doing anything, possibly confined to a wheelchair, or worse,” she told 7.30.

The attacks continued for five years and medication alone did not help.

With nothing to lose, Dr Billson tried the OMS program, changed her diet, and began exercising regularly.

Eventually, the attacks became less frequent and less severe.

Although she still struggles finding time to meditate, Dr Billson credits the OMS program with turning her life around.

“I haven’t had an attack for about 15 years,” Dr Billson said.

“I feel terrific.”

More testing required, says mainstream medicine

Dr Sam Gartland resting at home. March 2017PHOTO: Dr Sam Gartland says overcoming MS has made him a better doctor. (ABC News: Alex McDonald)

Some medical experts warn the program may not work for everyone diagnosed with MS.

Professor of Neurology and director of the Melbourne Neuroscience Institute at The University of Melbourne, Trevor Kilpatrick, is among those calling for randomised controlled trials to test some of the anecdotal results emerging from the Jelinek program.

“Even if it was beneficial for the first person, a disease such as MS is so variable we need to understand if an intervention is potentially of benefit, [and] who it might be of benefit for within the constellation of that disease,” Professor Kilpatrick said.

MS Research Australia says there is a growing body of evidence showing significant associations between MS, diet and other lifestyle factors.

Dr Gartland says the experience of being diagnosed and overcoming Multiple Sclerosis has made him a better doctor.

“Having a deeper understanding of what that entails for someone’s life, I think, is essential,” he said.

“That’s what I see every day in my work as a general practitioner.

“People who are able to make significant lifestyle change do better.”



Patients with primary progressive Multiple Sclerosis could soon have a treatment

“It is pretty terrifying when you don’t know whether it’s going to affect your walking, your eye sight, your brain,” said Thompson. “I have had it affect just about all my body parts. Now it is also affecting my brain, which is extremely difficult for me.”

Thompson and her husband have been in the beer business for years, starting the first microbrewery in southwest Texas. Her husband is now the Brewmaster at North by North West Restaurant and Brewery.

Because of MS, Thompson is no longer able to work in the brewery. She started a support group in Austin, connecting with others who live with the unpredictable disease of the central nervous system (CNS).

“Nobody understands MS like somebody that has MS. So it is very important to me to have people to talk to about it, moan about it, get angry about it, whatever,” said Thompson.

Many in the group have been looking forward to FDA-approval of a new treatment option, Ocrevus. The drug works by suppressing the immune system and would be the first treatment approved for patients with primary progressive Multiple Sclerosis (PPMS), which is usually more severe.

Dr. Greg Thaera is a neurologist at the Austin Diagnostic Clinic, who has patients eager to try the new treatment.

“The trials did prove positive, meaning that there was some benefit in prevention of long-term disability, which is actually a first for a Multiple Sclerosis drug, so it’s actually quite promising,” said Dr. Thaera.

But patients will now have to wait a bit longer for the drug. Ocrevus was expected to get FDA-approval by the end of the year, but it’s been pushed back another three months.

According to pharmaceutical company that created the drug, the extension is due to the manufacturing process, not the efficacy or safety of the drug.

“It’s the progressive forms of Multiple Sclerosis that at least at this time in 2016, we lack effective treatments for to halt the progression,” said Dr. Thaera.

“Some of them are desperate. We’ve had members of our group that have gone overseas to try and get some of the stem cell treatments,” said Thompson.

She herself has secondary progressive MS, and has tried several treatments over the years. She says many caused terrible side effects.

“The longer you’ve had MS and the more drugs you tried and the more drugs you hear about, you have a tendency to sit back and say, ‘Yeah, we’ll wait and see’,” said Thompson. “I’m hopeful, but hesitant.”

Dr. Thaera says the drug hasn’t yet proven to treat the type of Multiple Sclerosis Thompson has. But Thompson wants people to know that if you have MS it doesn’t mean your life is over.

“I think a lot of people fear MS is a death sentence, and it’s not. I’ve led an extremely happy life and I’ve been married 40 plus years, I have three wonderful children, two grandchildren.”

For Thompson’s friends and Dr. Thaera’s patients, they hope the wait is worth it.



Vitamin D may benefit people with multiple sclerosis, says Johns Hopkins research

Taking a high dose of vitamin D3 is safe for people with multiple sclerosis (MS) and may help regulate the body’s hyperactive immune response, according to a pilot study published in the medical journal of the American Academy of Neurology.

“These results are exciting, as vitamin D has the potential to be an inexpensive, safe and convenient treatment for people with MS,” says study author Peter Calabresi, M.D.

“More research is needed to confirm these findings with larger groups of people and to help us understand the mechanisms for these effects, but the results are promising.”

Low levels of vitamin D in the blood are tied to an increased risk of developing multiple sclerosis.

People who have multiple sclerosis and low levels of vitamin D are more likely to have greater disability and more disease activity.

For the study, 40 people with relapsing-remitting multiple sclerosis received either 10,400 international units or 800 international units of vitamin D3 supplements per day for 6 months.

Patients with severe vitamin D deficiency were not included in the study. The current recommended daily allowance of vitamin D3 is 600 international units.

Blood tests at the start of the study and again at 3 and 6 months measured the amount of vitamin D in the blood and the response in the immune system’s T cells, which play a key role in multiple sclerosis.

While researchers are still determining the optimal level of vitamin D in the blood for people with MS, a suggested range of 40 to 60 nanograms per milliliter (ng/ml) has been proposed as a target.

Participants taking the high dose of vitamin D reached levels within the proposed target, whereas the group taking the low dose did not reach the target.

Side effects from the vitamin supplements were minor and were not different between the people taking the high dose and the people taking the low dose. One person in each group relapsed.

The people taking the high dose had a reduction in the percentage of inflammatory T cells related to MS severity, specifically IL-17+CD4+ and CD161+CD4+ cells.

When the increase in vitamin D levels in the blood over base line levels was greater than 18 ng/ml, every additional 5 ng/ml increase in vitamin D led to a 1 percent decrease in the percentage of IL-17+CD4+ T cells in the blood.

The people taking the low dose did not have any noticeable changes in the percentages of their T cell subsets.

“We hope that these changes in inflammatory T cell responses translate to a reduced severity of disease,” says Calabresi. “Other clinical trials are underway to determine if that is the case.”





Fighting the Loneliness of a Chronic Illness

Multiple sclerosis makes me feel lonely. It makes me feel a lot of things, but loneliness is the saddest. It’s a cold hearted disease that doesn’t care that it has barged in and tried to take over my life.

This loneliness is a horrible, hollow emptiness inside of me. It doesn’t care that I have friends who love and care for me, and do so much for me. The loneliness is still there. I can feel lonely in a crowd. I’ve been so lonely I’ve actually Googled to see if isolation is a symptom of MS. My MS is a rare type, and just about everything else is a symptom, so it seemed reasonable.

I often feel that no one can understand me. The rareness of my malignant MS doesn’t help that. There are times I feel that my amazingly supportive family and friends are too busy to deal with me. It’s not fair to them. They have lives to lead, but it’s not fair to me either. This disease of mine is chronic. It’s with me for the long haul.

MS is known as a snowflake disease — no two people have the same symptoms. Even in support groups and amongst spoonie friends there can be very different symptoms of the same disease. This can be scary and isolating.

My tips to help feelings of loneliness are:

1. Realize that loneliness is a feeling, not a fact. This helps me to get on through my feelings and helps me realize that people do love me.

2. Reach out to supportive people. Even if that’s sometimes isolating, being around loving people can help.

3. Help someone else. It’s good for everyone involved. A win-win!

4. Don’t expect perfection from yourself or anyone else. Sometimes people are just going to be too busy, or you’re just going to feel lonely. Accepting existing feelings can speed up recovery from lonely feelings.

Also remember that chronic illness is one of life’s biggest teachers. It will quickly show who is a true friend. It will just as quickly teach us that everything is not worth major effort. Battles must be picked carefully. The chosen battles must be given our all. We must make ourselves top priority.




Jamie-Lynn Sigler on Parenting with Multiple Sclerosis: My Son ‘Gives Me a Reason to Look Forward to Every Single Day’

Nothing comes between Jamie-Lynn Sigler and her son.

The Sopranos alum stopped by the Today show Thursday and shared her experiences of living with multiple sclerosis while being a mom to 3-year-old son Beau Kyle.

“I tread lightly with telling him about my condition because there’s not a lot of it that he can grasp,” the actress, 35, said of how her MS diagnosis affects how she interacts with Beau.

“I would never use the word ‘sick’ because I don’t want to overload or scare him,” she explains.

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The actress and jewelry designer shares parenting duties with husband Cutter Dykstra, a pro baseball player, whom she married in Palm Springs, California, early this year.

And even though their son is still very young, he does understand the basic concepts of his mom’s limits.

“I tell him that Mommy’s legs can’t do that and if he wants to play with me, we have to play a game where we’re sitting down,” she explains of how she helps her son pick and choose what activities they take part in together. “He gets it for the most part.”

Sigler, who was diagnosed with MS when she was 20 years old, notes that there are plenty of ways the twosome find time to bond, from her taking on positions like pitcher or goalie in sports, creating art or watching a movie together.

“He’s a mama’s boy, so he’ll embrace any time spent together,” Sigler admits. “But he’s 3 years old, so he has his tantrums, but we manage as a family and do the best we can.”

It’s all worth it for Sigler, considering what her little man gives back to her.

“Beau gives me a reason to look forward to every single day,” she says. “He’s the light of my life.”



Will This Microcap Become A Big Player In Multiple Sclerosis?


Data of their lead product will be published any day now.

Competitors failed with their studies in SPMS.

Market cap of only $20 million.

In February 2014 I wrote an article about Opexa Therapeutics (NASDAQ:OPXA). Opexa is a small biotech stock working on their T-cell immunotherapy, Tcelna, which is in development for Secondary Progressive Multiple Sclerosis (SPMS).
The market cap of Opexa at that time was $45 million. Today the market cap is $22 million. Obviously the stock hasn’t performed well…

What’s interesting is that Opexa now is on the eve of publishing the Phase IIb results, scheduled for early Q4 2016, of its lead product in its pipeline: Tcelna.


According to the company’s website,

The lead product in the pipeline is Tcelna. In MS patients, the faulty immune system is not able to prevent the attack of a small sub-population of myelin reactive T-cells (MRTCs). Opexa’s strategy is to identify which specific antigens within each individual patient may be targeted by the immune response, and to inject a large therapeutic bolus of attenuated MRTCs back into the patient. Tcelna consists of attenuated antigen specific Myelin Reactive T-cells, and the injection is meant to educate the body’s immune system to recognize the similar MRTCs as “foreign” and destroy them.

Slide from September Presenation on http://www.opexatherapeutics.com/


Experimental drug may prevent development of multiple sclerosis in mice

The experimental drug laquinimod may prevent the development or reduce the progression of multiple sclerosis (MS) in mice, according to research published in the September 21, 2016, online issue of Neurology® Neuroimmunology & Neuroinflammation, a medical journal of the American Academy of Neurology.

“These results are promising because they provide hope for people with progressive MS, an advanced version of the disease for which there is currently no treatment,” said study author Scott Zamvil, MD, PhD, of the University of California, San Francisco and a Fellow of the American Academy of Neurology.

In a proper immune response, T cells and B cells help the body develop immunity to prevent infection. But in MS, an immune and neurodegenerative disorder, those cells can help create antibodies that attack and destroy myelin, the protective, fatty sheath that insulates nerves in the brain and spinal cord.

For this research, the investigators studied mice that develop a spontaneous form of MS. Mice were either given daily oral laquinimod or a placebo (water). The number of T cells and B cells were then examined.

In one study of 50 mice, only 29 percent of the mice given oral laquinimod developed MS as opposed to 58 percent of the mice given the placebo, evidence the drug may prevent MS. Plus, there was a 96-percent reduction in harmful clusters of B cells called meningeal B cell aggregates. In people, such clusters are found only in those with progressive MS.

In a second study of 22 mice, researchers gave laquinimod after mice developed paralysis and observed a reduction in progression of the disease. When compared to the control, mice given the drug showed a 49-percent reduction in dendritic cells that help create special T cells called T follicular helper cells, a 46-percent reduction in those T cells and a 60-percent reduction in harmful antibodies.

“This study has given us more insight into how laquinimod works,” Zamvil said. “But because this was an animal study, more research needs to be done before we know if it could have similar results in people.”



Migraine and Other ‘Common’ Ills Being Mistaken for Multiple Sclerosis , Study Finds

Image result for Migraine and Other ‘Common’ Ills Being Mistaken for  Multiple Sclerosis , Study FindsPatients with a number of common conditions — some neurological and some autoimmune, but others not — are being mistakenly diagnosed with multiple sclerosis (MS) because of difficulties in correctly determining this disease and, possibly, pressure to begin treatment early in the disease’s course, according to a recent study published in the journal Neurology.

“Although many rare disorders are known to mimic MS, it appears that presently, a number of common disorders are frequently mistaken for MS,” Andrew Solomon, MD, from the University of Vermont and the study’s lead author, said in a news release.

Several factors likely contribute to this problem, such as the lack of specific disease markers or blood tests to diagnose MS, the combination of different genetic and environmental factors responsible for the development of the disease, and the wide range of symptoms associated with the nerve damage observed in MS patients.

In the study, “The Contemporary Spectrum Of Multiple Sclerosis Misdiagnosis,”  Solomon and colleagues — all MS specialists working at four MS academic centers in the U.S. (University of Vermont, Mayo Clinic, Washington University, and Oregon Health & Science University) — pooled data on people they found to be wrongly diagnosed with MS.

Specifically, the neurologists identified 110 people either “definitely” (51 patients) or “probably” (59) misdiagnosed. Of these, 73 patients had one of five conditions: migraine (alone or in combination with other problems), fibromyalgia, an abnormal MRI (magnetic resonance imaging, a test widely used in MS diagnosis) with  nonspecific or nonlocalizing neurologic symptoms, a psychological condition, or neuromyelitis optica spectrum disorder (a disease that induces damage to the optic nerves and spinal cord).

As a consequence of the misdiagnosis, 72% of the patients were incorrectly medicated — treated for MS — sometimes taking MS medications for “many” years, and 33% remained misdiagnosed for at least 10 years before being informed they did not have MS by the researchers. Four patients without MS had also enrolled in clinical trials for experimental MS therapies.

An earlier opportunity to make a correct a diagnosis was identified for 79 of the patients, the researchers reported, noting the some MS treatments can have serious side effects.

“One drug, which 13 percent of the misdiagnosed patients took, can cause a potentially fatal brain infection,” Solomon said. “Other patients suffered from the discomfort and inconvenience of daily injections, others experienced side effects from medications, and finally, they lacked treatment for their actual correct diagnoses.”

Misinterpretation or misapplication of MS diagnostic criteria can contribute to an incorrect diagnosis, the researchers said. The criteria include the accurate interpretation of symptoms, physical examination, and radiological tests, such as MRI. However, because MRI may not always provide a clear and definite result, it is important that clinicians fully consider a patient’s entire history, symptoms, and examination results before committing to an MS diagnosis.

“There is pressure to make the diagnosis of MS early, and to start patients on MS therapies quickly,” said Solomon. “But in some patients who do not meet our diagnostic criteria, waiting longer and following them closely may help determine the correct diagnosis.”

The authors hope their study will help to increase awareness about the challenges in correctly diagnosing MS, leading to better physician education, and encourage further study into possible misdiagnoses.



The 6 Stages of Moving Beyond the Darkness of Multiple Sclerosis

husband, wife and two dogs sitting under treeAt only 22, an unexpected hurdle forced its way into my life — unannounced and unwelcome. I didn’t understand what was happening. In the context of my life, it just didn’t make sense.

Multiple sclerosis. I was blindsided by its arrival. It was during a time in my life which should have been carefree and not dominated by the uncertainty of a disease.

For the next four years I endured an avalanche of aggressive relapses. Hospital and rehab became a revolving door. I was too familiar with lying in hospital beds paralyzed, both physically and emotionally. Then sitting in wheelchairs having to learn how to walk again (and again and again).

Frustration quickly dominated my existence. MS made keeping up with my life — a new corporate career and inner city living — difficult and at times impossible. During this time MS overshadowed my identity. I found it difficult to enjoy life and was increasingly fearful of my future.

Yet today my life is no longer dominated by this negative energy. The way I feel and respond to MS and life today is unrecognizable to years earlier. When told I had MS I immediately grieved and was taunted by the dreams which had once motivated and inspired me. Yet there was no need for such anguish.

My life has been punctuated by incredible experiences I could never have imagined when diagnosed with MS. I left corporate life and retrained as a social worker. I travelled the world, living in Edinburgh and also volunteered with orphans in Romania. I serendipitously met my life partner. And I am now living in a seaside town having completed writing my first book.

But always inquisitive, it wasn’t enough for me to tell myself and others that life was great. That life had worked out OK. I wanted to make sense of my reality, and find out why.

I began to reflect on my journey and realized that over the years I have moved through the following six stages:

1. Hurdle

MS was definitely an enormous obstacle that interrupted my life. Its presence made continuing on with everyday life difficult and at times impossible. It also created despondency by blocking the visions and plans I had for my future.

2. Engagement

My life became dominated by MS. Although increasing my understanding of my disease was at times beneficial, my condition became all-consuming. Overtaking my every thought and encroaching upon my identity.

3. Agitation

I became increasingly frustrated. MS made living the life I had created, and the dreams and plans for my future, impossible. And without realizing, I had created a never-ending cycle of relapses and agitation.

4. Letting go

I was faced with a clear choice. Continue on as is, enduring relentless relapses and frustration. Or prioritize what is important — my health and well-being — and let go of any aspect of my life that was contributing to negative energy.

5. Taking time

Having prioritized what was important in my life, I was still experiencing relapses. I realized that I needed to take time to focus inwardly, as it was pointless stripping back and prioritizing what was important, only to rebuild my life based on how I have always interacted with, thought about and approached my hurdle and life. MS became a vehicle for personal growth physically, emotionally and spiritually.

6. Hope

After living with MS for over 15 years I realized that I was no longer defined by this disease. I had moved beyond the darkness of MS. I was able to find joy in my life and have a genuine excitement about my future.

The positive I take from my journey is the insight I have gained at each of these stages. And it is these discoveries that explain why my response to MS and life is unrecognizable compared to years earlier.

Working as a social worker, and just being aware of other peoples’ stories, I know we all experience hurdles that interrupt our lives. And it is how we respond to these difficulties that define our life experiences.

Accepting that my response to MS was going to affect my life experience has been crucial in my journey beyond the darkness of MS. I never want MS to define who I am or create a life filled with negativity and fear. And now with the stages of H.E.A.L.T.H. I have the confidence that I will continue to evolve, learn from my experiences and change how I interact with and experience life.