The Basics of Primary Progressive MS

Not all forms of MS are the same. The majority of patients who develop MS begin with a relapsing form of the disease that features acute neurological attacks and a waxing and waning of symptoms.

Approximately 10 to 15 percent of patients who develop MS have a progressive form of the disease from the beginning that features steady worsening of neurological function with occasional plateaus or minor improvements. A number of patients with relapsing-remitting MS (RRMS) go on to develop the secondary progressive MS (SPMS) form of the disease.

Primary progressive multiple sclerosis (PPMS) can be more challenging to diagnose and is definitely harder to treat than relapsing MS. Since PPMS doesn’t feature distinct clinical attacks like RRMS, the criteria for diagnosis is different. According to the National MS Society, the criteria for diagnosis of PPMS are:

1. One year of disease progression (worsening of neurological function without remission), AND
   
2. Two of the following:
   

• A type of lesion in the brain that is recognized by experts as being typical of MS
• Two or more lesions of a similar type in the spinal cord
• Evidence in the spinal fluid of oligoclonal band or an elevated IgG index, both of which are indicative of immune system activity in the central nervous system   Fulfilling these diagnostic criteria may take years longer for PPMS than the equivalent does for RRMS.

Treatment for PPMS is limited.

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What is Primary Progressive Multiple Sclerosis?

Retired Hockey Player Talks About MS and Service Dogs

Retired Canadian hockey player Bryan Bickell sat down with HealthCentral to talk about hockey, multiple sclerosis, fatherhood, and his new service dog program for people living with MS.

Bickell, 31, played in the National Hockey League from 2006 to 2017 for the Chicago Blackhawks and the Carolina Hurricanes. He was diagnosed with multiple sclerosis in November 2016.

Health Central (HC): As a professional athlete, what were the initial symptoms that concerned you the most and how long did it take to get a diagnosis of MS?

Bryan Bickell (BB): I had a pain in my shoulder, which I thought was from sleeping on it wrong. I brushed it off, took some Aleve, and moved on with my day like many athletes with injuries do. Then it went down my arm and a week later down to my legs. I was really concerned. I’d been through a lot of injuries and knew that something was off. Days later, I had an MRI and got the news.

HC: What were your biggest fears after your MS diagnosis?


BB: If things were going to get better. I didn’t know if I was going to be able to play hockey, or if I would feel the way I did [at that moment] for the rest of my life. But due to the MS treatment I’ve been taking now for six or seven months it’s gotten a lot better. I feel awesome right now and things are looking positive.

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Bryan Bickell: From Skates to Service Dogs

MS Is Like A Lion: Fierce, Scary, and Untamed

“My MS would be a lion; it can be fierce, scary, and at times untamed.” — Calie W.

HC: What are your greatest joys with MS?
Calie: My greatest joy with MS is being able to share my struggles, trials, and triumphs with the online MS community through articles published at Multiplesclerosis.net. Being open and honest about my diagnosis and how MS has changed my life has lifted a tremendous weight off my shoulders.

HC: If your MS were an animal, what would it be and why?
Calie: My MS would be a lion; it can be fierce, scary, and at times untamed. However, a lion can also demonstrate great strength and beauty. I know that when others look at me, they may focus on what they see on the surface. They may not recognize what I go through, because thankfully I don't have many visible symptoms. But underneath the surface, my MS can be scary and bite at any given time.

HC: What words of advice do you have for others in managing day-to-day life with MS?
Calie: Take care of yourself. I know that is so much easier said than done, but taking care of your body and giving yourself the time to rest is very important. That is something I wish I would have realized much earlier in my diagnosis.

HC: What words of advice do you have for others in managing the future with MS?

Calie: I encourage that we raise awareness and keep others informed as to what MS is, including its different forms and symptoms. It is important that others realize what we go through and know that each of us can be affected in different ways.

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RealMSProfiles: Calie W

Using Tai Chi To Help MS Symptoms

Tai Chi, also called Tai Chi Chuan, is an ancient Chinese martial art that has evolved into a multiple-element form of exercise, featuring slow, gentle, dance-like movements that encourage deep breathing and relaxation, improve balance, and strengthen muscles and joints. I’ve heard Tai Chi referred to as “meditation in motion.” One benefit of Tai Chi is that is doesn’t require any special clothing or equipment. It is one of the mind-body therapies in complementary and alternative medicine that begins where you are and doesn’t push you beyond your abilities, but does encourage you to explore the edges of your comfort zones.

How does Tai Chi help MS?

Several studies have examined the effect of Tai Chi on different aspects of living with MS and its symptoms. In a systematic review of the literature, researchers found evidence that supports the effectiveness of Tai Chi on improving quality of life and functional balance in people living with MS patients. A small number of studies also reported the positive effect of Tai Chi on flexibility, leg strength, gait, and pain. The effect of Tai Chi on fatigue, however, is inconsistent across studies.

Tai Chi and quality of life in MS

Quality of life (QOL) is a helpful measurement in MS studies because it encompasses physical, material, social, and emotional well-being, as well as personal development and physical and social activity. Five studies examining the effect of Tai Chi on QOL in MS were included in this systematic review. In general, MS patients who engaged in Tai Chi sessions over three- to twelve-week time periods experienced significant improvements on subscales of QOL such as pain, emotional well-being, energy, vitality, social function, health distress, physical health, mental health, and overall QOL.

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Benefits of Tai Chi for Multiple Sclerosis

What is Trigeminal Neuralgia?

A sharp pain explodes through your face and jaw. You think that perhaps an invisible bolt of lightning just struck without any warning. You’re not sure what happened, but you do know that you don’t want it ever to happen again. You may have experienced your first acute attack of trigeminal neuralgia.

Trigeminal neuralgia (TN), also known as the tic douloureux, prosopalgia, the “suicide disease,” and Fothergill’s disease, is a facial pain disorder characterized by brief electric shock-like pains that can occur abruptly, typically on only one side of the face and along one or more of the three branches of the trigeminal nerve. The trigeminal nerve, which is the fifth cranial nerve, is responsible for sensation in the face and motor function controlling the jaw.

The stabbing pain of TN most often affects the right side of the face. Frequency of attacks can range from one per day to 12 or more per hour. Common triggers of TN include chewing, talking, or smiling; drinking cold or hot fluids; touching, shaving, brushing your teeth, or blowing your nose; or sudden contact with cold air.

An individual can often point out exactly where the pain of TN is felt. In the majority of cases, the pain shoots from the corner of the mouth to the back of the jaw. In fewer cases, the pain spreads from the upper lip or teeth up to and around the eye and eyebrow.

There are two patterns of pain in trigeminal neuralgia. The first pattern is episodic and affects more than 50 percent of patients. The second pattern features constant pain, the mechanisms and development of which are not well understood. In episodic cases, the intensity of the pain typically increases from simply being present to an excruciating pain felt deep in the face in less than 20 seconds. Muscle spasms may accompany the pain.

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MS Signs and Symptoms: What is Trigeminal Neuralgia?

Personalized Treatment for MS or Herd Mentality: What Does Your Neurologist Do?

People diagnosed with multiple sclerosis (MS) and their neurologists must make many decisions when it comes to treating the disease. With FDA-approved disease-modifying therapies, it can be challenging to know which one to use, if any.

How do doctors and patients choose? To make an informed decision, neurologists are expected to follow clinical practice guidelines that frequently summarize the available medical evidence. Meanwhile, patients are expected to do their own research and consider lifestyle factors and personal preference, as well as doctor recommendations.

It’s clearly unwise for neurologists to follow outdated clinical guidelines; consider that when the American Academy of Neurology (AAN) published its guidelines in 2002, only four treatment options were available. A less obvious concern is when neurologists ignore current clinical guidelines and instead follow the recommendations of other neurologists they know or experts in the field, a behavior called “herding.”

Herding can be detrimental to patient care, suggests a study published in January 2017 in the journal Patient Preference and Adherence.

What is herding in medicine?

Herding is a phenomenon in which individuals follow the behavior of others rather than making a decision independently. Herding occurs in MS care when one neurologist follows the therapeutic recommendation of a colleague even when this advice is not supported by clinical guidelines.

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Does Your Multiple Sclerosis Specialist Follow the Herd?