An Interview with Body Builder David Lyons

Competitive bodybuilding is one way that David Lyons conquers multiple sclerosis (MS). Diagnosed with MS in 2006, David is motivated to educate and inspire people living with the disease to focus on fitness and nutrition and to develop a mindset that anything is possible.

In 2012, with his wife Kendra Lyons, R.N., David founded the MS Fitness Challenge (MSFC) charity to help bring his message worldwide. David has received the Milestone Award from the National MS Society, and in 2015, he was presented the Health Advocate Lifetime Achievement Award by Arnold Schwarzenegger.

He’s also the author of “David’s Goliath: Winning the Battle Against All Odds” (2013) and “Everyday Health and Fitness with Multiple Sclerosis: Achieve Your Physical Wellness While Working with Limited Mobility” (2017). He’s working on a new show called “Pumped: The Muscle Hustle” with Lou Ferrigno.

He spoke with HealthCentral about his experience.

HealthCentral (HC): What were the initial symptoms that led to your diagnosis?

David Lyons: MS caught me off guard in the gym. Initially I experienced severe pain, numbness, tingling, and lack of coordination in my left arm while working out. Within a few weeks, the symptoms radiated throughout my body and moved into my legs. I became bedridden for months during the pre-diagnosis and diagnosis stage. When I was finally hospitalized, I was almost paralyzed from the chest down.

HC: What did you most fear when you learned of your diagnosis?


David: After a five-day stay in the hospital, the symptoms were still so severe that I felt I could not continue as a bodybuilder, or might not step foot in a gym again. The neurologists said that MS would quickly make me wheelchair bound due to the tremendous nerve damage I experienced during that initial attack. I began to fear that would become my reality. Twelve years later and almost 60 years old, I’m still not using a wheelchair.

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Building Your Fitness Future With MS: An Interview with David Lyons

How to Reduce the Pain of Injections

Self-injectable medications

Several of the medications used to treat multiple sclerosis are injectable drugs. The requirements for storage and administration differ for each drug, but here are some universal tips that will help reduce the pain of the injections. Please note that if you have questions or difficulties with a specific drug, call the drug company’s helpline or ask your own MS nurse for help.

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Room temperature medication

Medications which must be kept in the refrigerator for storage are often much less painful upon injection when at room temperature. Before injecting, remove one pre-filled syringe from the refrigerator and leave the syringe out for at least 30 minutes before using. Or alternatively, while still in the wrapper, hold it in your armpit to bring it to body temperature.

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7 Tips To Reduce the Pain of Injections

Common Multiple Sclerosis Symptoms

Multiple sclerosis is a disease of the central nervous system (CNS) with symptoms that can affect almost anything from head to toes. The disease is so variable that no two people with MS are likely to have exactly the same combination of symptoms. As MS symptoms mimic dozens of other conditions, it is also important to consider that this list is not exclusive to MS.

Here are 50 of the most common MS symptoms:

Sensory problems

• Abnormal sensations (dysesthesias)
• Numbness, tingling, burning, or tightness
• Pins and needles
• Severe itchiness (pruritus)
• Hypersensitivity to touch
• Pain - acute or chronic, mild to severe
• Loss of proprioception (sense of body position in space)
• Inability to detect vibrations
• Impaired sense of taste or smell
• Trigeminal neuralgia - stabbing pain in the face
• L’Hermitte’s sign - electrical shock-like sensation running down the spine and into the limbs when you bend your neck forward or backward
• The MS hug

Motor problems

• Loss of strength or muscle weakness
• Loss of muscle tone (hypotonicity) or increased muscle tone (hypertonicity)
• Spasticity - continuously contracted muscles and/or muscle spasms
• Myoclonus - sudden involuntary muscle contractions
• Tremor
• Foot drop
• Problems walking, impaired gait, or mobility problems
• Paralysis
• Loss of balance
• Loss of coordination (ataxia)

For more MS symptoms, read this post in its entirety:

Top 50 MS Symptoms

Nystagmus and Multiple Sclerosis

Nystagmus is a condition that causes the eyes to make quick, repetitive, uncontrolled movements — from side to side, up and down, or in a circular pattern — making the eyes appear to bounce around. The jerky motion may be triggered by optical stimuli or physical motion, or may occur at rest.

Nystagmus can be mild, occurring only when a person looks to the side, or it may be severe enough to impair vision. Nystagmus often makes it difficult to focus steadily on a fixed object.

What causes nystagmus?

Nystagmus can be an inherited condition, showing up in early childhood, or it can develop later in life due to an accident or illness. Nystagmus is often a symptom of an underlying medical problem, such as stroke, multiple sclerosis, or head trauma. Other causes of nystagmus include severe nearsightedness, albinism, inflammation of the inner ear, central nervous system diseases, and medication side-effects. Sometimes the cause may be unknown.


In persons with multiple sclerosis, lesions in the brainstem and cerebellum may interfere with the nerve signals that affect motion of the eyes causing nystagmus. According to the MS Foundation, approximately 35 percent of individuals with multiple sclerosis may develop nystagmus. Abnormal gaze-holding mechanisms, vestibular imbalance, and impaired fixation are the most common causes of nystagmus in multiple sclerosis.

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MS Signs and Symptoms: What is Nystagmus?

MS Pain: What is the MS Hug?

Pain is not a symptom of multiple sclerosis, right? Wrong. That has got to be one of the more frustrating myths for those of us living with MS. Pain in MS can show up as neuropathic pain or musculoskeletal pain. A particularly disturbing type of pain in MS that can sometimes feel like a boa constrictor is squeezing the breath out of you has commonly been called the MS hug.

Neuropathic pain

Symptoms of MS stem from damaged myelin (the coating that protects nerves) that impacts proper nerve function and health. Neuropathic pain can be caused by disrupted nerve signals. Symptoms of neuropathic pain may include abnormal sensations — tingling, numbness, skin crawling, itching, burning, or prickly sensations — which are called paresthesias. These can be acute or chronic, severe or mild, painful or just plain weird.

Musculoskeletal pain

In MS, disrupted nerve signals and overly sensitive motor neurons can lead to spasticity and/or painful muscle spams. Musculoskeletal pain caused by muscle spams, muscle weakness, physical stress on joints, or poor coordination are commonly associated with MS. These pains may be acute or chronic. When they show up suddenly, last only a brief period of time, and disappear rapidly, they are called paroxysmal symptoms. Paroxysmal symptoms may occur once or repeat over a longer period of time. If they show up repeatedly, that might be a sign of an MS relapse.

Treatment for MS pain

Common pharmacological management of neuropathic pain in MS includes anti-seizure drugs, corticosteroids, anti-spasticity drugs, or benzodiazepines. Antidepressant agents and opioids may help to modulate the experience of pain. Musculoskeletal pain may respond to physical therapy, stretching, spasticity medications, and conventional painkillers such as ibuprofen.

The MS hug: Definition and causes

The MS hug is a highly unpleasant, painful banding sensation that occurs anywhere around the torso. Some people in the online community have referred to the MS hug as the “Squeeze o’ Death.” Symptoms of the MS hug can show up anywhere on the torso, on one side or the other, or circling all the way around the body. The pain can range from mild numbness or tingling to excruciatingly sharp pain or pressure. Each person’s experience is unique and may even differ from one episode to the next.

Explanations of the cause of the MS hug vary. The pain may be neuropathic in origin such as dysesthesia (which is basically a really bad paresthesia). The pain might stem from extreme spasticity in the intercostal muscles of the rib cage. There are three layers of muscle fibers in the intercostal muscles that connect the ribs and assist with breathing. If these muscles are involved, symptoms may include chest tightening, difficulty breathing, and limited mobility.

What to do if you have the MS hug

If you suddenly experience chest pain or asthma-like symptoms, or you feel like a big snake is trying to squeeze the life out of you, don’t assume that it is your MS. Seek medical attention immediately. There may be another cause of your symptoms or pain. It’s better to err on the side of caution when your health is concerned......

Read this post in its entirety:

What is the MS Hug?

Why Does the Neurologist Tap My Finger?

The neurologist is looking to see if there is a finger flexor response.  The finger flexor response is demonstrated by a sudden flexing of the thumb and/or index finger.  There are two ways to cause this response:

• The doctor snaps or flicks the nail of the middle or 4th finger.  A positive finger flexor response elicited in this manner is known as the Hoffmann reflex or sign.
  
• The doctor holds the middle finger while partially flexing it between his/her finger and thumb, then taps or flicks the underside of that finger.  A positive finger flexor response elicited in this manner is known as the Trömner sign.
  

What causes the thumb to flex?

The finger flexor response (Hoffmann relex or Trömner sign) is somewhat similar to the Babinski sign in that it is suggestive of a lesion or impingement along the corticospinal tract.

What is the corticospinal tract?

Very long nerve axons which originate in the part of the brain called the cerebral cortex travel through the brainstem, cross over at the top of the cervical spine and travel down each side of the spinal cord. This path is the corticospinal tract which is sometimes called the pyramidal tract since the area where the crossover of nerves occurs has a pyramid-like shape.

Corticospinal tract neurons are referred to as “upper motor neurons” but they do not control muscles directly. Neurons in the ventral horn that directly innervate (or stimulate) muscle are called lower motor neurons.  It is damage in lower motor neurons which causes atrophy of muscle, while damage in upper motor neurons does not.

How do the Hoffmann or Trömner signs differ from the Babinski sign?

Each of these signs indicate damage in the corticospinal tract. The Babinski sign indicates damage anywhere along the corticospinal tract. However, the Hoffman and Trömner signs are a bit more specific in that they indicate a lesion or damage above the C5 or C6 level of the cervical spine.

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MS Signs and Symptoms: What is the Hoffmann Reflex?

Staying With Rituxan Rather Than Switching to Ocrevus

The latest disease-modifying therapy, called Ocrevus (ocrelizumab), was approved in March 2017 for relapsing and primary progressive forms of MS. Ocrelizumab works differently than other DMTs for MS in that it selectively depletes B-cells. B-cells are a type of white blood cell that develops antibodies in response to specific antigens, a process which helps the immune system to fight invaders. However, abnormal B-cells may mistakenly produce autoantibodies that contribute to autoimmune diseases such as multiple sclerosis, rheumatoid arthritis (RA), lupus, or scleroderma.

Ocrevus is very closely related to the drug Rituxan (rituximab) which is used to treat certain autoimmune diseases, such as rheumatoid arthritis and myasthenia gravis, as well as cancers like non-Hodgkin’s lymphoma and chronic lymphocytic leukemia. Both therapies work in the same way to alter the immune system. Rituxan is also commonly used off-label to treat MS, and I have personally used it since 2009.

Ocrelizumab specifically targets and destroys CD20+ B-cells in a way that serves to lower the immune system. Studies of ocrelizumab demonstrated that it could reduce relapses by 46 to 47 percent in people with relapsing MS compared to treatment with subcutaneous interferon beta-1a. People with primary progressive MS (PPMS) who received ocrelizumab were 24 percent less likely to experience disability progression than those who received placebo in a clinical study.

Ocrelizumab is an intravenous infusion therapy which is delivered twice a year in an infusion center or doctor’s office. The first dose is divided in half and given as two separate infusions, two weeks apart. Pre-medications, such as corticosteroids and an antihistamine, are given in advance to reduce the risk of infusion-related reactions that may include itchy skin, hives, coughing or wheezing, throat irritation, flushing, shortness of breath, dizziness, or fatigue. Since ocrelizumab weakens the immune system, patients are at greater risk of developing infections. Additional risks include reactivation of the hepatitis B virus and progressive multifocal leukoencephalopathy.

The decision to switch treatment or not

The MS community has received ocrelizumab with excitement and open arms. I personally know several people who have either switched to Ocrevus already or are considering it. Several factors come into play when making treatment decisions, including comparing efficacy, side effects, impact on lifestyle, and insurance coverage. Twelve years ago, MS patients would choose a treatment and stick with it, even if their disease remained active. Now, patients have options and may switch DMTs when their disease fails to reach NEDA (no evidence of disease activity).


Like many people living with multiple sclerosis, I am determined to do all I can to slow down the disease. Although I might not always exercise as much as I should or I might indulge in rich food on occasion, I still try to focus on healthy lifestyle habits and reduce stress. An important part of fighting this disease for me is to consistently use a disease-modifying therapy.

Read this post in its entirety:

Why I Am Not Considering Ocrevus?

Is CIS the same as MS?

When someone experiences a single demyelinating or inflammatory attack of the central nervous system that causes neurological symptoms resembling MS, it is called clinically isolated syndrome, or CIS. Here are some common questions about CIS and how it is distinguished from other forms of MS.

Is CIS the same as MS?

According to updated recommendations redefining the phenotypes of MS made in 2014, CIS is considered an official form of MS. However, not everybody who experiences an episode of CIS will go on to develop full-blown multiple sclerosis.

How does CIS resemble other forms of MS?

An episode of CIS includes neurological symptoms that last for 24 hours or longer and are caused by inflammation or demyelination within the central nervous system (CNS). Myelin is the fatty substance that surrounds and protects nerves. Myelin helps to speed messages along nerves, and a loss of myelin serves to slow down the messages or keep them from getting through in the first place. A place where inflammation has attacked the myelin is called a lesion. The effects of demyelination are the same for each form of MS.

An attack of CIS can be monofocal — involving a single symptom related to a single lesion — or multifocal — involving more than one symptom caused by lesions in different locations in the CNS. The CNS includes the brain, spinal cord, and optic nerves. An episode of CIS is often followed by complete or partial recovery.

How is CIS diagnosed?

Similar to other diseases of the central nervous system, diagnosis of CIS may include laboratory tests to eliminate other potential causes of symptoms, a complete neurological exam to access function of the nerves, a thorough medical history, and magnetic resonance imaging (MRI) to look for evidence of inflammation or demyelination within the CNS. Depending upon symptoms, the recommended MRI given at this stage of diagnosis may only include the brain and not the spinal cord.

Read this post in its entirety:

What Is Clinically Isolated Syndrome?

Focus On Yourself At Least Once Every Day

Each New Year brings hope and a sense of optimism amidst a potentially gloomy season with brittle cold weather and often gray skies. It is a time to begin with a proverbial clean slate. A time to start fresh and improve something about your life — eat better, exercise more, spend less money, read more books, learn a new skill — practically any goal can become a New Year’s resolution.

But there’s something about resolutions — they’re hard to keep. Each January, many people make an effort to do something different and end up disappointing themselves when a month later their resolve has fizzled into the gray sky. It can be total resolution evaporation.

My suggestion to prevent the evaporation? Make only one resolution: Focus on yourself once every day.

Life presented many challenges to me in the past 9 months. It was a really tough year. As a result, I did not take care of myself as I should. I stopped exercising. I stopped going out and having a blast on my bike. I stopped caring what I ate. I focused simply on surviving and taking care of others.

Maybe you can relate. At some time in your life, perhaps you have fallen victim to ignoring your own needs too. It’s an all too common situation, no matter what the details of the circumstances are. What you and I need to do now is to find a way to begin to take care of ourselves without a total resolution meltdown.

Once I realize what I really need — to show myself kindness and love — I can find ways to do just that. It’s not an easy task, honestly, because I’m so programmed to take care of everybody and everything else first. But there’s always going to be something else to do.
Since my neglected needs are primarily physical, I have chosen a physical solution. Your needs may be emotional, social, recreational, or financial, thus your solution should match the corresponding need.


Here are the questions I asked myself in order to identify what I need to do to show myself kindness and love within my current circumstances.

Read this post in its entirety:

The Only Resolution You Need to Make

Shingrix versus Zostavax for People with MS

People with MS may be at higher risk of getting shingles because of reduced immune system function due to disease-modifying treatments. High-dose steroids, often used during relapses, may also increase the risk of a shingles outbreak.

One of the biggest differences between these two shingles vaccines is the fact that Zostavax contains a live-attenuated (weakened) virus to stimulate the immune system, while Shingrix is a non-live, subunit vaccine that works by introducing only a small part of the actual microbe. Those of us living with multiple sclerosis or many other chronic diseases take medications that reduce the effectiveness of our immune systems. Because of this we can’t receive vaccines that contain live virus, which would put us as even greater risk of developing the very disease we’re trying to protect ourselves from.

Since Shingrix does not contain live virus, it should be much safer for people with lowered immune systems. My doctor was very happy to inform me of this during our routine medical visit. I was thrilled to learn the news. ACIP should issue recommendations on the use of Shingrix in people with compromised immunity in February 2018.

Even if you've already had shingles, it is still a good idea to be vaccinated. An episode of shingles might provide a few years of protection from recurrence, but that protection fades away. People who have already had the Zostavax vaccine can also receive the Shingrix vaccine. In fact, the ACIP recommends it.

My experience with shingles

In August 2005, I was still in the process of being diagnosed with multiple sclerosis and was prescribed a five-day course of intravenous solumedrol (IVSM), followed by an oral steroid taper, to reduce inflammation. It was an extraordinarily stressful time because the steroids temporarily reduced my immune system. By the time September rolled around, I began to develop small, itchy blisters on one side of my face and neck. I recognized the outbreak as shingles because a family member had recently contracted the virus.

Several antiviral medications — acyclovir, valacyclovir, and famciclovir — may be used to reduce the severity of shingles and shorten its duration. But these medications need to be taken as soon as possible after the shingles rash appears in order to be effective. Since I recognized my own case of shingles, I went to the ER for assessment and treatment. It’s a good thing I did because my rash was very close to my eye. The ER doctor had an ophthalmologist examine my eye carefully to make sure that the virus had not entered it. Thankfully, it was fine.

Read this post in its entirety:

The New Shingles Vaccine is Good News for People with MS

Using Disease-Modifying Therapies to Slow Down Multiple Sclerosis

Currently available disease-modifying therapies (DMTs) are primarily used in relapsing forms of the disease, including relapsing-remitting MS (RRMS), secondary-progressive MS (SPMS) in patients still having relapses, and progressive-relapsing MS (PRMS). Some DMTs are also approved for delaying a second exacerbation in people who have been diagnosed with clinically isolated syndrome (CIS). One DMT has been approved for primary progressive MS (PPMS).

Disease-modifying therapies (DMTs) can be grouped together in a variety of ways. They can be categorized as oral drugs, self-injectables, or infusible medications; or they may be identified by their mechanism of action (MOA, or how they work). DMTs can also be divided into so-called first-line agents, which are common initial treatment choices for people diagnosed with MS, or second-line agents, which are typically reserved for patients who have not responded adequately or are unable to tolerate first-line drugs.

Self-injectable DMTs

Self-injectable disease-modifying therapies considered to be first-line options include Avonex (interferon beta-1a), Rebif (interferon beta-1a), Betaseron (interferon beta-1b), Extavia (interferon beta-1b), Copaxone (glatiramer acetate), and Glatopa (glatiramer acetate). Interferon beta drugs are FDA- approved to treat all relapsing forms of MS. With the exception of Rebif, interferon beta drugs are also approved for use in CIS. Copaxone is a synthetic polypeptide agent which is approved for RRMS and CIS. An additional injectable medication includes Plegridy (pegylated interferon beta-1a).

Oral DMTs

Since 2010, three oral therapies, each with different mechanisms of action, have been approved by the FDA for treatment of relapsing forms of MS. Gilenya (fingolimod) is the first in a new class of oral MS medications, called sphingosine 1-phosphate receptor modulators, which suppress lymphocyte circulation in the immune system. Two other agents in this class are currently in clinical trials. Aubagio (teriflunomide) is also the first in a new class of oral MS medications called pyrimidine synthesis inhibitors which have anti-inflammatory and immunoregulatory properties that have been used to treat rheumatoid arthritis and psoriatic arthritis. Tecfidera (dimethyl fumarate) is in a class of drugs called Nrf2 activators believed to have anti-inflammatory and cytoprotective properties.

Intravenous DMTs

Intravenous therapies include Tysabri (natalizumab), Ocrevus (ocrelizumab), Lemtrada (alemtuzumab), and Novatrone (mitoxantrone) which are typically reserved as second-line treatment choices. Tysabri, a humanized monoclonal antibody that binds to alpha-4 integrin and inhibits T-cells from crossing the blood-brain-barrier, is administered every 4 weeks by specially trained healthcare providers. Tysabri is approved for relapsing forms of MS and is highly effective, but carries the risk of a serious brain infection called progressive multifocal leukoencephalopathy (PML). Ocrevus, a humanized monoclonal antibody that binds to and depletes CD20+ B-cells, is administered twice a year with the first dose split into two infusions. Ocrevus is associated with infusion-related reactions and increased risk of breast cancer.

Read this post in its entirety:

Slowing Down Long-Term Progression of Multiple Sclerosis With Disease-Modifying Therapies

MS Symptoms May Aggravate Osteoarthritis

Although osteoarthritis (OA) is generally considered to be a “wear and tear” condition affecting older adults, it can also affect individuals in their 40s and 50s. I was first diagnosed with knee osteoarthritis in my early 40s, several years after being diagnosed with MS in my mid-30s. My case of OA is tricompartmental, meaning that it affects each of three joint areas where the thigh bone and lower leg come together and behind the kneecap. Eventually I will need total knee replacement on both my left and right knees.

Do MS symptoms lead to osteoarthritis?

One of the more complex risk factors for knee OA is muscle weakness, particularly in the quadriceps. MS can be associated with weak thigh muscles. Researchers examining potential associations between MS and osteoarthritis hypothesized that the knee joint in people with MS might be more greatly affected due to problems with balance and muscle weakness and may result in earlier joint degeneration.

To test this theory, researchers used ultrasound to investigate whether there is a correlation between the breakdown of femoral cartilage — the cartilage that covers the end of the thigh bone — and MS-related disease parameters.

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Are Multiple Sclerosis and Osteoarthritis Connected?

Sex and MS: Speak Up! Your Doctor May Not Ask

During a routine visit with your neurologist, there is much material to cover. Your doctor will ask about symptoms, watch you walk, and conduct a neurological exam. He or she may also ask about your family life, work life, relapses, or treatment concerns. However, it turns out that many doctors may be uncomfortable asking about your sex life.

In a survey of 42 neurologists, members of the Consortium of Multiple Sclerosis Centers, more than 80 percent of respondents report routinely assessing for depression, anxiety, sleep, and pain—but only half ask about sexual dysfunction; 18 did not routinely assess sexual function; 24 did.

Multiple sclerosis (MS) can affect sexual function in women and men with MS, thus impacting quality of life. Symptoms of sexual dysfunction can include sensory changes, decreased lubrication, erectile dysfunction, decreased libido, or problems with orgasm. In some patients, spinal cord lesions can be associated with bladder, bowel, and/or sexual dysfunction.

Sexual dysfunction (SD) is a common symptom of MS that may be under-diagnosed, particularly in women with the disease. A survey of 86 women with relapsing-remitting MS revealed that 27 percent of respondents experienced SD. Persons with other forms of the disease may be more likely to have sexual dysfunction.

Read this post in its entirety:
Why You Should Talk To Your Doctor About Your Sex Life

Does Acupuncture Improve Walking in MS?

Results from a recent study, published in the Journal of Alternative and Complementary Medicine, demonstrate that acupuncture may improve walking in people with MS. The study included 20 people (60 percent female) diagnosed with relapsing-remitting MS who experience trouble walking.

Gait impairment was evaluated by the 25-foot walk test (T25-FW). Participants were randomized into two groups. Group A received “true” acupuncture while group B received “sham” acupuncture. Immediately before and after treatment, gait was measured. At least one month later, groups received the other acupuncture treatment and gait was measured again.

When using true acupuncture, 85 percent of cases showed an improvement in T25-FW test (with two cases showing no change and one case showing increased time to walk 25 feet following treatment), compared with 40 percent when sham acupuncture was done. The average improvement in the true treatment group was 13.9 percent, with greater effect in females than males, 17.5 percent and 8.6 percent improvement, respectively.

Can acupuncture help other MS symptoms?

A 2014 review of studies examining the effects of acupuncture on MS found that scientifically rigorous research is lacking. Authors identified fifteen articles that met their review criteria. Of those articles, five examined the effect of acupuncture on quality of life, three looked at the effects of acupuncture on MS fatigue, two examined the effects of acupuncture on MS spasticity, two examined the effect of acupuncture on MS pain, and three were animal studies.

Read this post in its entirety:
Can Acupuncture Help MS Patients Walk Better?

Fear of Change: A Relapsing MS Moment

There is nothing predictable or constant with multiple sclerosis. People living with the disease may have periods of time where not much seems to be going on. Other times, there may be relentless relapses that leave neurological debris in their wake. The high degree of adaptability required to mentally and physically handle these changes is tremendous.

Stability is a welcome blessing when it comes to living with MS or any other chronic disease. With stability comes some level of predictability. However, it doesn’t prevent the potential rollercoaster that changes, of any sort, may cause.

I’ve enjoyed a sense of stability for years now. In fact, I’ve only had one major relapse since December 2011 that occurred in February 2016. One reason for this streak of “luck” is a treatment that has proven to be effective for me. I’m what you would call a “responder” to the medication rituximab.


Recently I’ve encountered a threat to access of that same medication. Since I’ve been sick so many times during the past year, my doctor has ordered laboratory tests to check for levels of specific immune system components, called immunoglobulins. I don’t have the results yet; but based on concern for a potential immunodeficiency, my doctor has delayed my next round of infusions until we know more.

Read this post in its entirety:
MS Moment: The Recurring Fear of Change

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.

Read this post in its entirety:
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.

Read this post in its entirety:
RealMSProfiles: Calie W

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?

Exciting Moments on the Bike: Watch Out For Deer!

With the purchase of an outdoor bicycle last year, a world of possibilities has blossomed for me. My husband, Rob, and I have discovered new adventures and places to explore right in our own community. Just last week, we rode into Washington, D.C., for the first time along the Potomac River. The views were spectacular.

There was one ride last autumn that stands out in my mind. Rob and I packed up our bikes and explored a different part of the Washington and Old Dominion (W&OD) Trail. The W&OD is one of many former railroad, rails-to-trails corridors in the country. Rails-to-trails are frequently enjoyed by bikers, walkers, runners, rollerbladers, and more. They can get relatively crowded on beautiful days.

During the week of Thanksgiving, Rob and I packed up our bikes and traveled on a portion of the W&OD that we hadn’t seen before. We traveled far west before stopping for a break at a local brewery. I’ve come to learn that brew pubs and bike paths form a mutual symbiotic relationship.


By the time we began our return trip, the sun was beginning to sag in the sky and encounters with walkers on the trail became less frequent. Our handlebar lights lit up the narrow width of the trail as we rode into the growing darkness. At one point, I noticed a family standing next to the side of the trail; they were looking at something nearby. I was briefly puzzled... then I saw it!

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Adventures With MS: Riding With The Deer