Remembering Life Before MS: What I Miss Most

My multiple sclerosis diagnosis took multiple years. It wasn’t a quick affair. Years separated early attacks, including five years between a case of temporary blindness from optic neuritis and the loss of the use of my left hand and arm which finally led to a diagnosis. During those years, my life was evolving as well.

Before MS, I was actively building a career as a freelance musician in the Washington, D.C., area. At one point, I was teaching a weekly schedule of 44 private students while also performing in at least two or three concerts each month. The demand upon my time and energy was tremendous.

Since MS, I have become a wife, writer, patient advocate, speaker, consultant, moderator, medical reviewer, and new Bike MS participant. I will always be a musician and still teach private lessons in my home studio. My schedule is just as busy as before, although I am engaged in different activities.

What I miss most:

Chest-thumping sounds

I miss the tremendous sensation of the sound waves produced by 100 other musicians on a symphony stage traveling through my body during a performance. The joy of listening to perfect harmony and stylistic precision up close and personal. The mix of overtones in the ears that stimulate the brain in a most satisfying way. There is nothing quite like it.

Now, I have difficulty with sudden sounds that feel like an ice pick to the brain.

Separation of work and home

I miss that satisfying feeling of coming home after a long day of lessons and/or rehearsals to take my shoes off, sit on the couch, and chill with some late night television. With clearly defined boundaries, both physical and mental, of what is work and what is not work, it is nice to feel the separation between activities.

Now, I work from home. As a writer and community moderator, I can be “at work” 24 hours a day, anytime of the day. I find myself with my laptop computer in my recliner toggling between projects for hours at a time. And with the potential cognitive problems associated with MS, it becomes difficult to stay focused on any one project.

Hiking and crunching leaves

As a graduate student, I lived not far from beautiful Brown County State Park in Indiana. Hiking was particularly fun during the autumn, when leaves of many colors covered the ground. The combined sound of rustling leaves in the trees and boots sweeping through blankets of leaves on the trail was particularly satisfying on a cool, crisp morning.

Now, I need to be able to see any obstacles on the ground or risk catching my toes on the tiniest of surface imperfections. Tripping on air has become one of my special talents since living with MS has impacted sensation in my feet. Walking on any path that is covered with leaves, stones, or debris poses an extreme tripping hazard.

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Three Things I Miss Most About Life Before MS

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.

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Why You Should Talk To Your Doctor About Your Sex Life

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

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

Preparing For My First BikeMS

In anticipation of our first year participating in BikeMS, here are some things I did to get ready.

To get ready for the ride, I still have quite a bit of training and conditioning to do. Not being a seasoned athlete, I realize that I need to be careful in how I approach getting ready. Here are some of the tips and strategies I’ve learned along the way.

• Get the right fit. For comfort, safety, and efficiency, your bike needs to fit your body and be adjusted to reduce physical stress and maximize the strength of your efforts. Go to a local bike shop for expert advice.
• Set realistic goals. Since I can’t already ride 30+ miles, I need to build up to that distance. I’m keeping track of my rides with a free phone app (e.g., Strava, MapMyRide) and attempt to increase my average ride by one to three miles each week.
  
• Schedule rest. Although it is tempting to think that riding every day will be the best way to prepare, it’s the wrong way to build strength and endurance. Rest days are necessary to allow your body to repair muscle and begin to compensate for the increased physical demand. TrainingPeaks, a free resource for Bike MS participants, emphasizes recovery days and the need for varied levels of workout intensities.
  
• Enjoy variety. It’s important not to do the same things every time you go out on the bike. Some training days should feature greater physical demands — increased elevation gain or sprints, for example — or easier, low-intensity spins that keep you moving but don’t wear you out. I like to alternate trails that present different challenges or easier sections.
• Focus on hydration and nutrition. It’s vital to stay hydrated before, during, and after workouts. The amount of water and enhanced sports drinks you may need depend upon your body, the environment, and your workout demands. The National MS Society offers basic information on hydration and nutrition to get you started.

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BikeMS: Setting Goals and Going the Distance

How Animals Help Us Cope With MS

As I was writing this evening, my gray cat Oscar jumped up on the arm of my recliner. He purred loudly and rubbed affectionately against my arm. Distracting me from my work, Oscar laid it on thick as he thanked me in advance for the tasty dinner he was about to receive.

Oscar is my multiple sclerosis (MS) buddy. He is my friend. He is one of three cats who keep us entertained and provide lots of laughs and affection. Oscar frequently joins Rob and me in bed after we’ve turned off the lights at night, and he is usually right at my feet when I wake in the morning.


Oscar is a gentle soul who seems endlessly thankful to be a part of our family. A skinny stray who showed up on our porch, he was starving for affection as much as for food. I fed him, but he always asked for pets before eating. One rainy night, he showed up bleeding at our house. It was all I could take. I brought him inside the house, and from this moment forward, he became a member of our family.

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My MS Buddies: My Cats

Peeing in the Street: Embarrassing Moments with Multiple Sclerosis

The #MSMoment I’d like to share happened several years ago, but I still remember it like it happened yesterday. I felt fortunate that nobody was around to witness it, but that didn’t make me feel any less embarrassed.

Every six months, I go to the dentist for a routine cleaning and checkup. That’s something we each should do on a regular basis, because it’s important for our overall health. On a beautiful spring day a few years ago, I left my appointment around noon. With no music lessons scheduled until 4 p.m., I had plenty of time to get some lunch, go to the post office, and stop at the grocery store on the way home.

After leaving the dentist’s office, I went to my car, opened the door, and sat in the driver’s seat. As I turned the ignition, thoughts of the bathroom flittered across my mind. I hadn’t noticed any urge to go to the bathroom until that very moment.

“Maybe I should have stopped at the restroom on the way out of the building?” I thought to myself. But then I would have had to ask for the bathroom key, go to the restroom, and take the key back to the dentist’s office, when all I wanted to do was get on with my day.

“I could go back in. Or maybe I’ll just wait until I get to the restaurant for lunch. That would work.”
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MS Moments: Urinary Incontinence in the Street

Does Personality Affect Cognition in People with Multiple Sclerosis?

Multiple sclerosis (MS) is a chronic disease that frequently leads to neurological symptoms and disabilities. The effects of MS can result in sensory changes, vision problems, mobility challenges, impaired control over bodily functions, cognitive dysfunction, and altered moods.

The cognitive challenges of MS, while quite common, can be particularly disturbing. More than half of all people with MS will develop problems with cognition, according to the National MS Society. Certain types of cognitive functions are more likely to be affected by MS than others, for example:

• Information processing (dealing with information gathered by the five senses)
• Memory (acquiring, retaining, and retrieving new information)
• Attention and concentration (particularly divided attention)
• Executive functions (planning and prioritizing)
• Visuospatial functions (visual perception and constructional abilities)
• Verbal fluency (word-finding)

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How Does Personality Affect Cognitive in MS?

My Husband, My Caregiver

Although I am the one diagnosed with multiple sclerosis (MS), I am not the only one who lives with MS in our family. My husband, Rob, lives with MS, too.

As is common in many relationships, Rob and I take care of each other. We have a fluid give-and-take that helps to make our household function smoothly. For example, while I’m busy teaching music lessons, Rob will often prepare dinner after he gets home from work. I usually take care of laundry during the days.

More unique and special to our relationship, Rob has become excellent at watching out for the intervening effects of MS. If I start to get overheated in the summer, Rob will encourage me to get something icy to drink. Better yet, he often brings me something to drink without mention. If I begin to have a cognitive meltdown from sensory overload, he gently guides me to a less confusing, less stimulating environment, so that I can think straight again.


Watching out for me didn’t come automatically for Rob; it took time, practice, patience, and careful attention. The more we as a team have learned about how MS affects me, the better we become at ameliorating some of its effects. We become a stronger team in the process.

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My Husband, My Caregiver

From Couch Potato To Outdoor Cyclist

On the bike, I couldn’t ride for even two or three minutes without my legs feeling numb and spastic due to MS. So I decided to back off my efforts and count revolutions instead of minutes with 300 spins as my short-term goal (150 for each leg). If I cycled for 300 rotations at a steady, slow pace, it would equal about five minutes.

That was the beginning of my long transformation from couch potato to outdoor cyclist. During that first year, I slowly transitioned from counting revolutions to counting minutes to counting miles. I also started counting calories too. After a year, I lost 50 pounds and could ride for 45 minutes on the exercise bike and still feel good afterward.


I started to dream of riding a real bike again. But I hadn’t done so since college, and I didn’t have a bike. Many months later, I went shopping. The image of me trying out bikes when I hadn’t even been on one in many years was funny. I eventually chose one and began riding it short distances. Just like with the exercise bike, I started with small goals: down the street and back, one mile, two miles, 15 minutes, 30 minutes, and more.

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From Couch Potato to Outdoor Cyclist

Real MS Profile: Felicia E

“Be prepared for the unknown and roll with it!” — Felicia E.

A HealthCentral interview with MS patient, Felicia E.

HC: Felicia, when were you diagnosed with MS? What led to your diagnosis?
Felicia: I was diagnosed in 2015, the same year I turned 50 years old. My legs had gone numb and tingly. My diagnosis was based on magnetic resonance imaging (MRI) and results of a spinal tap.

HC: How has MS impacted your life?
Felicia: MS has caused reduced physical activity and reduced cognitive function. Unfortunately, extreme fatigue keeps me from engaging in my previous level of activities.

HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?
Felicia: I tried to go Paleo, but it wasn’t successful.

HC: What are your greatest fears with MS?
Felicia: I’m afraid of dependence on others, loss of ambulatory abilities, and bowel incontinence which has already begun.

HC: What are your greatest joys with MS?
Felicia: The sense of support and camaraderie of MS support groups.

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#RealMSProfiles: Felicia E

Spring Cleaning Your Emotional Health

Over time, houses can become messy and cluttered. Heavy drapes keep out winter drafts, but block the cleansing light of the sun. As springtime breezes over the windowsill, cobwebs flutter in the corners. Until light illuminates the cobwebs and dust bunnies, they are too easy to ignore, allowing them grow into a fierce filament army.

In the past, I have described my own depression as a monster that hides in the corners. Most of the time small and miniature, the monster can be easily ignored. But allow it to grow unnoticed in the darkness and the mini-monster becomes a beast straining to break free from imaginary chains.

Dealing with emotions is not as easy and straight forward as spring cleaning. But I’ve found that if I acknowledge the emotions, really take the time and mindfulness to notice that they are there, the negative emotions lose some of their potency while the positive emotions gain strength. Shedding light on the emotions helps to know where to mentally sweep, as long as you do not “sweep” the emotions under your cognitive rug.

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Cleaning Out The Emotional Clutter Of MS

Building A Strong Health Care Team

Building a strong health care team begins with YOU as you recruit team members with the skills and expertise to function in a coordinated way to provide you with the best care. As you work in active partnership with your team members — doctors, nurses, therapists, pharmacists, and office staff — it will become easier to identify quality care and to be empowered to communicate your needs, questions, concerns, and personal choices.

Primary care team

As a person living with multiple sclerosis (MS), it’s often easy to think of your neurologist as your primary, or most important, physician. However, you continue to need access to a primary care physician (PCP) who can take a big picture view of your health, while being available for urgent, acute, and chronic needs. For example, you would call your PCP if you suspected a urinary tract infection so that you could be quickly tested and prescribed treatment. Or if you have chronic conditions, such as hypothyroidism or high cholesterol, it is your PCP who monitors your health with routine laboratory testing and prescribes medication to treatment the condition.

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Building Your Best MS Health Care Team

Reasons You Might Need Another MRI Scan

Before I was officially diagnosed, I had undergone several of these tests multiple times. For example, I had six MRI scans between the first time my vision “seemed off” in 1994, the time I was temporarily blind in 2000, and when I lost the use of my left hand and arm in 2005. Since my diagnosis I’ve had eight additional MRI scans, each including one to three areas of the central nervous system: brain, cervical spine, or thoracic spine.

Only a few times have I questioned, “Do I really need another MRI right now?”

Top three reasons you might need another MRI

Confirm diagnosis. To diagnose MS, there must be objective evidence that damage to myelin — the fatty substance that covers and protects nerve cells — occurred in two different locations of the central nervous system at two different points in time. The use of gadolinium— a contrast agent injected into a vein during an MRI scan — can help the radiologist distinguish between new “active” lesions and old lesions.

If both active and non-active lesions are seen on scans conducted during a single session, then MS diagnostic criteria may be met. However, it is more likely that repeat MRI scans will be needed to demonstrate that multiple (many) scleroses (scars) have occurred at different points in time and confirm a diagnosis of MS.

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Why Do I Need To Get Another MRI Scan?

Surviving the Holidays with MS

The holiday season offers many opportunities to relax, party, shop, spend time with family and friends, travel, eat lots of goodies, and have fun. However, for people living with chronic diseases like multiple sclerosis (MS), the change in routine can take its toll, especially if you go-go-go until you drop.

How can you protect yourself against the consequences of holiday fun?

Remember that MS is a constant companion. Just because there are so many cool things to do during the limited number of days of the holiday season doesn’t mean that you should neglect your own health. Continue to eat nutritious food and respect your body’s need for exercise and rest.

Stay hydrated. Holiday parties frequently offer special drinks, particularly alcoholic beverages. This is not the time to substitute your eight glasses of water each day with eight glasses of wine, beer, or eggnog. To compensate for the dehydrating effects of alcohol, increase your water intake. Alternate a glass of wine with a glass of water to keep those brain cells plumped up and hydrated.

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MS Doesn't Take a Holiday

How To Have An Easier MRI Experience

MRI scanners use strong magnetic fields to generate images. The standard imaging protocol in MS suggests use of a minimum 3 Tesla (3T) "closed machine" for best results. The imaging sequences focus on the white matter and grey matter of the brain and/or spinal cord before and after venous administration of a contrast agent, gadolinium, to enhance certain anatomical features.

Here are some things you need to know to make your MRI experience less stressful and more successful.

Before the MRI

Dress comfortably. Because the MRI scanner is basically a large magnet, you must not wear clothing with lots of metal rivets, buttons, or zippers. To avoid the need to disrobe and put on a hospital gown, I prefer to go to my MRI appointment wearing sweatpants and a comfortable T-shirt. That way, the only clothing I have to remember to take off in the dressing room is my underwire bra. Don’t worry, the technician will double-check that you aren’t wearing anything that would interfere with the MRI.

Remove body jewelry, watch, and wallet. Consider leaving your jewelry at home for safe keeping. You will be asked about metal in the body — such as a pacemaker, cochlear implants, joint replacements, or metal fragments — because in certain circumstances, an MRI can cause damage to the equipment itself or to body tissue when metal is involved. Some metals, such as titanium clips from a breast biopsy, do not pose a problem.


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What It’s Like to Have an MRI Test for MS

Foster a 'Can Do' Spirit to Fight MS

Do you believe you have the power and skills to complete tasks and accomplish specific goals? If so, you have a high level of self-efficacy. People with high self-efficacy may be said to have a “can do” spirit.

Self-efficacy can be influenced by past experience, peer pressure, and physiological factors. Self-efficacy can also influence behavioral choices (e.g., avoiding tasks when belief in our ability is low, or choosing to undertake tasks when self-efficacy is high), affect motivation (e.g., people with high self-efficacy are more likely to persist in order to accomplish a task, whereas people with low self-efficacy might be discouraged and give up sooner), and affect thought patterns and responses (e.g., low self-efficacy can make you think a task is more difficult than it actually is, which leads to poor planning and increased stress).

Multiple sclerosis is a disease that can erode one's independence and lead to lower self-efficacy. MS is often associated with significant reduction in physical activity, which also correlates with lower self-efficacy. Conversely, higher self-efficacy has a positive effect on physical activity and correlates with higher health-related quality of life (HRQoL) and lower rates of depression.

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Build Confidence and Foster a ‘Can Do’ Spirit to Fight MS

Managing Sensory Overload with MS

What do large parties, grocery stores, and movie theaters have in common? Lots and lots of sensory stimuli delivering a potentially overwhelming combination of sounds, smells, lights, colors, and motion in a crowded space.

Sometimes sensory input, such as sounds, can cause significant pain, physical response, confusion, and fatigue in persons living with multiple sclerosis. Symptoms such as hyperacusis and stimulus-sensitive myoclonus (add link to new post) can become quite debilitating. Too much sensory input may also interfere with a person’s ability to interact with others and to function socially or professionally.

Sensory overload is not something that just affects children with autism or attention deficit hyperactivity disorder (ADHD). It can affect those of us living with MS.

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12 Ways to Manage Sensory Overload

Managing MS During and After Pregnancy

Disease activity during pregnancy

For some women with MS, pregnancy brings about fewer MS symptoms. This may be due to the body’s immune system being more tolerant of the growing human being inside. Clinical and MRI disease activity related to MS are suppressed, particularly during the third trimester. This connection has led to research using hormones such as estriol to treat MS. So far the studies have been small, showing modest benefit.

Disease-modifying therapy during pregnancy

Women with MS are encouraged to stop disease-modifying therapy (DMT) once they become pregnant, if they had not already stopped DMT use when trying to get pregnant. Women with MS who become pregnant while on a DMT should consider participating in a formal pregnancy registry such as the one sponsored by MothertoBaby.org or those hosted by pharmaceutical companies. Several small studies have reported outcomes related to the use of DMTs during pregnancy, particularly during the first trimester, but information is still limited. Data suggest that glatiramer acetate or interferon beta are safe to use. However, each person with MS needs to make personal decisions regarding DMT use and pregnancy in collaboration with her doctor.

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Modern MS Management During and After Pregnancy