Finding Community and Support Through the RA Healthline App

Healthline has created such a positive network, community, and resource for those of us living with rheumatoid arthritis (RA) or rheumatoid disease (RD).

It’s been almost a month since the RA Healthline app launched and in this post I want to share my favorite features and why I am still excited about this growing community for anyone living with RA or RD.

If you haven’t joined yet, you must download the free app today!

FAVORITE FEATURES:

Live Chats

I talked about the daily live chats in my first blog post and they are still my favorite feature. If you haven’t checked it out yet, live chats occur in each of the different Groups at least five days each week. The chats are hosted by our RA Guide, Ashley, or by a Guest Co-Host such as myself. 

In fact, Thursday night, June 25, at 8pm ET/5 pm PT in the Diagnosis Group, I will be hosting a chat on the subject of RA diagnosis—Who Diagnosed Your RA? For me, it wasn’t a rheumatologist who initially said, “I think you have RA.” It was my hand surgeon. 

Groups

The groups themselves are my next favorite feature. This section is organized by tabs that lead you to ongoing discussions surrounding different categories. Not everything is about RA though. My favorite group is the “Escape from RA” group. Other favorites include the “Mental and Emotional Health”, “General Health”, and “Daily Life” groups. 

But that’s only 4 out of the 15 groups!! So much to choose from and so many discussions to explore. 

By entering a group, you will find conversation threads pertaining to the overall group topic. It’s easy to navigating through the threads, ask a question, answer a question, leave a comment, or simply offer words of support. 

Community

It’s not always easy to talk about your disease, to truly be open and honest. The community is growing every day and the conversations are rich and bountiful. Within the RA Healthline community, you will find people who totally “get it.” It’s a place you can be vulnerable and give comfort. Most importantly there’s always room for you to add your voice!!

THE IMPACT OF RA HEALTHLINE:

Have you ever wanted to easily find articles about RA. relationships, diet, exercise, symptoms, treatments, or more? The RA Healthline app will notify you of an article of the day each morning. Within the app, additional material from their main website are highlighted. It’s like having access to the Healthline website within the app itself.

Have you ever wanted to ask a question about RA or about dealing with friends who don’t understand? Here is where you can do that and receive responses from a broad community of people living with the disease. And you don't need to be tied to your computer to do so. The app goes wherever you go.

RECAP:

RA Healthline app offers different types of support all wrapped up in one location. In short, the app provides:

• Connection with real people living with RA
• Live chats covering all sorts of topics
• Informative Healthline articles and resources
• A place to give and receive advice and support
• Portability — It goes with you wherever you have your phone.
• Everything at your fingertips, literally

Are you looking for support and a community who understands? Download the free app here (Apple or android). Create an account. And jump right in!! I hope to meet you there!

RA Healthline: A New App Designed for the RA Community

This post is sponsored by Healthline, a partner of mine. I am so excited to be working with them to help get the word out about their new app, RA Healthline. This will be a great resource offering unique ways to make connections with the RA community. Download your free RA Healthline app today!

For many people, smart phones are their lifeline to friends, business, information, entertainment, and support. Hundreds of health-related apps have been developed to help us keep track of physical activity, food/meals, symptoms, mood, appointments, and more.

I’m excited to tell you about a new app, simply called RA Healthline, that is developed by Healthline with whom I have partnered to help get the word out as the app officially launches on June 1, 2020. 

The RA Healthline app is unique in that it features a combination of some of the best elements of a Facebook group, support group, discussion forum, live chats, and curated articles in a moderated, safe community. 

I have already been working with Healthline for several months to co-host group chats within their well-established MS Healthline app. So I know what kind of coolness you will find when you explore the RA Healthline app and help shape this unique RA community from the beginning.

RA Healthline Features:

Home: 

The Home tab looks a bit like your typical Facebook newsfeed. You get to see what new comments, posts, or questions have been posted within the community. 

Groups:

The Groups section is where you’ll find a list of categories like Relationships, Diagnosis, Symptoms, Work, Complications, Lifestyle, Medication, and more. The Groups section reminds me of traditional forums where members can interact with and support each other. Tap on a group to view the conversation threads and add to the discussion. You can ask a question, respond to a conversation, or share a story. 

Live Chats:

Alternating within different groups will be a daily “live chat” with our Guide Ashley or co-hosted by one of our special guests, including ME!! Keep your eyes out for the alerts. Our first chat will take place on Tuesday, June 9, 2020, at 8 PM ET in the General Group.

I will be hosting a live chat on Thursday, June 11, 2020, at 8 PM ET in the Navigating Healthcare Group. We'll be talking about "How to Make the Most of Your Rheum Visit."

Members:

Within the Members section, you can be custom matched with other members who share characteristics with you based on age, interests, and more. You can also view all the members, see whose online, and strike up a conversation.

Messages:

This section is where your one-on-one conversations will be stored. Think of this like your text message app within the RA Healthline app.

Discover:

The Discover section is where you can find all the best articles and expert resources related to RA from healthline.com. It’s like having the website show up inside the app. How cool is that?

RA Healthline app offers different types of support all wrapped up in one location. In short, the app provides:

• Connection with real people living with RA
• Live chats covering all sorts of topics
• Informative Healthline articles and resources
• A place to give and receive advice and support

Check it out and let me know what you think! Download the free app here and join the community today!

8 Tips For Surviving Your Next MRI

MRIs are fun! Wait, you haven’t heard that before? 

MRIs are dreaded torture chambers! Maybe that’s the way you feel about the tool which is ubiquitous with multiple sclerosis diagnosis and disease monitoring. 

Magnetic resonance imaging (MRI) uses electromagnetic fields and radio waves to create detailed images of the body, including myelin, inflammation, and neurodegeneration. MRI machines are LOUD and uncomfortable. The scans for MS can take anywhere from 45 minutes to 2.5 hours depending upon which parts of the central nervous system are being examined: brain, cervical spine, and/or thoracic spine.

It’s no fun to get an MRI — knock knock tap tap tap buzz buzz buzz tap tap tap — but it doesn’t have to be entirely unpleasant. Here are some strategies I’ve adopted over the past two decades to help me survive the torture chamber.

Music, music, music! As a professional musician, I have a vast assortment of soundtracks stored in my head which I “play” during the MRI scans. If I want to stay light-hearted, I might mentally play through some of my favorite horn concertos. If I want to mentally drift off with a more intense long haul, I might go with Mahler Symphony No. 5. Sometimes I might just play games and try to time songs with the estimated length of an individual scan. If the technician says, “this scan will last six minutes,” I break out a little Bohemian Rhapsody by Queen. 

Some MRI facilities have machines that can play music through headphones. If your facility offers this, you can create your own MRI playlist on your iPod with your favorite songs and plug it into the machine. You might want to go with calm, soothing sounds or pump up the volume with some classic 70s and 80s rock. Some facilities might ask you what Pandora station you’d like to listen to. Just don’t move to the beat or get your hips swinging and swaying. 

Dress comfortably. I can’t stress this enough. I usually wear sweat pants (no metal, warm and cozy) and a short-sleeve T-shirt. For the ladies, I recommend you go ahead and get comfortable — ditch the bra. If you are an underwire lady, you can’t wear the bra anyway because of the metal. Although tennis shoes are allowed, I usually take them off and wear socks just to keep my feet warm. 

You may be offered a blanket before the MRI. Take it. The room can get cold when you can’t move. I like to keep my hands under the blanket but my upper torso uncovered because it can also get a little warm inside the machine. Many MRI machines will have a little air blow across your face. That helps to keep you cooler and reduce feelings of claustrophobia.

Stay hydrated. In the days before the MRI, make sure that you are drinking enough water. It will help the MRI technician find a better vein for the gadolinium injection and reduce the chances you get “cotton mouth” during the procedure, which can become uncomfortable. Avoid coffee the morning of the MRI and be sure to empty your bladder multiple times before getting settled on the table for a couple of hours. 

Keep limber and reduce pain. If you don’t have a daily routine of stretching, start now. Keeping your muscles and joints relaxed and limber will help keep you more comfortable during an MRI scan. If you experience spasticity or pain, don’t forget to take your medication. Tell the technician if you need extra supports under your legs, cushion under pressure points, or other supports to make you more comfortable. 

Stay calm. It’s understandable to be nervous before and during an MRI scan. Talk to your doctor if you feel anxious or claustrophobic. Anti-anxiety medication may help you to relax. If at anytime during the scan you are uncomfortable, SPEAK UP! Let the technician know what the problem may be so that together you can find a solution. 

Some people even meditate or fall asleep during an MRI session. 

Keep eyes closed. Looking at the inner surface of the MRI machine right in front of your face can be disconcerting for some people. I like to keep my eyes closed so I take out my contacts ahead of time to avoid dry, sticky contacts afterward. I know people who take a thin handkerchief to lay over their eyes to help them relax during the MRI. 

Communicate. I’ll stress it one more time. If at anytime you become unduly uncomfortable — too hot, cold, anxious, need to shift the position of your legs, etc.— press the button you are given and talk to the technician. If you’d like your technician to let you know when you’re halfway through, let him know. If you’ve hung on until the end of a sequence when the MRI machine is quiet and need to get some good swallows in, just mention it so that the technician can wait until you’re good and ready to continue. 

(originally published on HealthCentral in 2018)

Impact of Comorbidity and Multiple Sclerosis

Living with one chronic disease, such as multiple sclerosis, can be challenging. Living with more than one chronic disease can make diagnosis and treatment difficult. Living with comorbidity can lead to disability, lower quality of life, delayed diagnosis, increased hospitalization, and increased risk of death for people living with MS.

Some comorbid conditions may be symptoms of MS, such as depression or anxiety, but others are unrelated to MS. Common comorbidities in multiple sclerosis include depression, anxiety, high cholesterol, high blood pressure, gastrointestinal disease, thyroid disease, and chronic lung disease. The subject of comorbidity is a personal one as I actively manage three of these comorbidities in addition to MS.

Mental health and MS

Mood disorders, such as depression, anxiety, and bipolar disorder, are more common in people with MS than in the general population. The prevalence of depression ranges from 36 to 54 percent in people with MS, according to the National MS Society, compared to 16 percent in the general population. Anxiety disorders affect approximately 36 percent with MS while bipolar disorder affects between 6.5 and 13 percent. These estimates are somewhat higher than what was found in a 2015 worldwide literature review and significantly higher than results of a 2018 retrospective analysis of claims data for patients living in the United States. 

Feelings of anxiety or depression may be symptoms of MS, might signal a relapse, or might relate to conditions that were diagnosed before MS. No matter the cause of these symptoms, it is important to discuss what’s going on with your doctors. Mental health conditions can go undiagnosed or untreated. 

Many neurologists are willing to prescription medication for a mood disorder, but others may refer you to a specialist instead. I have worked with a licensed clinical social worker (LCSW) to learn how to deal with various challenges I face related to mental health while medication prescribed by my neurologist helps to alleviate symptoms. 

Cardiovascular disease and MS

In the United States, the most common comorbidities in people with MS, based on claims data from 2006 to 2014, are high cholesterol and high blood pressure which affect between 26 to 30 percent of people with MS. Researchers found that claims for high cholesterol and high blood pressure were 39 and 25 percent, respectively, more likely among male patients compared with female patients with MS. However this contradicts results from a previous study that found hypertension, heart failure, and coronary heart disease were significantly less common in people with MS. 

Treatment of cardiovascular comorbidity is particularly important for people with MS as researchers have determined that high blood pressure and heart disease contribute to advanced brain atrophy and vascular comorbidity is associated with increased risk of disability progression. 

Lifestyle changes can help reduce the risk of heart disease. If you smoke, stop. Exercise and healthy eating can help to control high blood pressure. To lower cholesterol levels, eat a diet high in fiber, but low in cholesterol, saturated fat, and refined sugar. Stay active, increase physical activity, and maintain a healthy weight. If lifestyle changes alone are not enough, your doctor may prescribe medication to help control risk factors for heart disease.

Gastrointestinal disease and MS

In the US claims study mentioned above, gastrointestinal (GI) disease comorbidities were found in the claims of 18 to 21 percent of patients with MS. In general, these diseases were more common among women than men. The gastrointestinal diseases included were celiac disease, constipation, Crohn’s disease, diarrhea, dysphagia (difficulty swallowing), gastroesophageal reflux disease (GERD), irritable bowel syndrome, and ulcerative colitis. 

Several of these GI conditions double as symptoms of MS. If you experience any difficulties with bowel dysfunction, constipation, diarrhea, trouble swallowing, GERD, or other GI symptoms, please talk to your neurologist. You may be referred to a gastroenterologist for evaluation. While there is no single MS diet, some people with MS report that they feel better when they limit sugar and grains from their diet.

Thyroid disease and MS

Thyroid disease comorbidity was documented in 13 to 17 percent of the medical records for MS patients in the US claims database study. A prior systematic review estimated the overall prevalence of thyroid disease comorbidity in MS patients at 6.44 percent, ranging from 0 percent to 16 percent depending upon the specific condition. Examples of thyroid diseases included in the analysis were hypothyroidism, hyperthyroidism, Hashimoto’s thyroiditis, and Grave’s disease. 

Although thyroid disease has been identified as one of the more common comorbidities in people diagnosed with MS, the prevalence of thyroid disease prevalence of thyroid disease in people with MS is similar to that of the general population. Since one MS disease-modifying therapy, Lemtrada (alemtuzumab), is associated with thyroid disease, periodic thyroid function tests are required.

Impact of comorbidity on MS

Living with comorbidity, or having more than one health condition to manage, negatively impacts a person with MS in several ways. It can lead to greater physical disability and quality of life. The person with MS may have more symptoms to deal with which can complicate treatment decisions. Increased risk of death is the ultimate reason to try to reduce comorbidity in people with MS.

What can you do?

If you are coping with MS and one or more additional health conditions, it’s vitally important to seek proper medical treatment and to make healthy lifestyle choices. The choices you can make to improve your chances of living well with MS are very similar to the healthy actions suggested to reduce cardiovascular disease. 

Healthy steps you can take include:

• Stay physically active and move your body as you can
• Stay mentally and socially active as well
• Stop smoking
• Limit alcohol consumption
• Focus on eating proper nutrition
• Eliminate vitamin deficiencies
• Maintain a healthy weight
  Stay hydrated
• Get adequate sleep
• Reduce stress 
• Take time for yourself 
• Seek routine medical care to stay on top of your health

(originally published on HealthCentral.com in 2018)

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.

Read this post in its entirety:

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.

iStock

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.

Read this post in its entirety:

7 Tips To Reduce the Pain of Injections

What is Spinal MS?

Maybe you have heard the term “Spinal MS.” What is that? I thought MS could be relapsing, primary progressive, secondary progressive, or “benign.”

The lesions caused by multiple sclerosis can occur anywhere within the central nervous system, which includes the brain, the spinal cord, and the optic nerves. Approximately 55-75 percent of patients with MS will have spinal cord lesions at some time during the course of their disease. If a patient does have lesions in the spinal cord, he/she may be said to have Spinal MS.

A smaller number of MS patients, approximately 20 percent, may have only spinal lesions and not brain lesions. I am an example of one of those 20 percent of MS patients who only have spinal lesions.

Symptoms of Spinal MS

Spinal MS occurs more commonly with lesions in the cervical spine (the neck area) in approximately 67 percent of cases. Lesions in this area often affect the corticospinal tract. Neurological signs which indicate lesions in the corticospinal tract include the Babinski Sign and the Hoffmann Sign. Additional indicators of lesions in the upper spine include the l’Hermittes phenomenon and the Romberg Sign. At one time or another, I have shown each of these signs of neurological involvement/interference due to MS lesions.

Although the location of lesions do not always closely correlate to areas of clinical disability, there are cause/effect patterns which do emerge. Patients with spinal cord lesions are more likely to develop bladder dysfunction (e.g., urinary urgency or hesitancy, partial retention of urine, mild urinary incontinence), bowel dysfunction (e.g., constipation or urgency), and sexual dysfunction (e.g., erectile dysfunction or impotence in men, genital anesthesia or numbness in women, pain with intercourse for either sex). Complete loss of bladder and bowel control may be lost in more advanced cases of MS.


Spinal cord lesions can also lead to sensory and motor deficits, including dysesthesias, spasticity, limb weakness, ataxia or other gait disturbances.

Read this post in its entirety:

What is Spinal MS?

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

Marcus Gunn Syndrome and Multiple Sclerosis

One test which my neurologist, ophthalmologist, and primary care doctor each conduct during every office visit is the “swinging flashlight test.” You know the one. The doctor asks you to look ahead then shines a penlight first toward one eye, then the other, alternating quickly to observe your pupils’ response to light.

I strangely enjoy this test because I know that my pupils will show something unique. Something which proves that I have damage to my optic nerve. My pupils show a Relative Afferent Pupillary Defect (RAPD) or Marcus Gunn Sign.

What does the doctor look for during the “swinging light test”?

The pupils (the black centers of the eyes which dilate or constrict in response to light) are inspected for size, equality, and regularity. Did you know that the pupils will constrict or dilate when you look at objects far or near? They do, which is kinda cool.

More importantly, each pupil should constrict quickly and equally during exposure to direct light and to light directed at the other pupil (the consensual light reflex). Using the swinging light test, the doctor can test and observe the pupillary response to consensual light in order to determine if there is a defect present.

Normally, the pupil constriction does not change as the light is swung from eye to eye. When the light is moved quickly from eye to eye, both pupils should hold their degree of constriction.

What is a Relative Afferent Pupillary Defect?

The Afferent Pupillary Defect (APD) or Relative Afferent Pupillary Defect (RAPD) is an abnormal and unequal response in the pupils of the eyes when exposed to light. It basically demonstrates that one optic nerve transmits a different message to the brain than the other one. Testing for RAPD is a good way to implicate or rule out optic nerve damage such as is caused by optic neuritis.


My temporarily blinding case of optic neuritis in 2000 left my right eye impaired. It doesn’t register light in the same way as my left eye as the optic nerve has permanent damage. When the doctor shines the light in my left eye (the “good” eye), both pupils will constrict. This is normal. When the doctor quickly moves the light to my right eye (the “bad” eye), my pupils begin to dilate since the brain thinks that less light is coming in. This shows that there is damage to the corresponding optic nerve.

Read this post in its entirety:

MS Signs and Symptoms: What is Marcus Gunn Syndrome?

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.

Read this post in its entirety:

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.

Read this post in its entirety:

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.

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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.

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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.

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The Only Resolution You Need to Make