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Tag: multiple sclerosis

  • Talking About B-Cell Therapy for Your MS

    Talking About B-Cell Therapy for Your MS

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    Suppose a doctor has recommended B-cell therapy for you, or for a family member or close friend, to treat multiple sclerosis (MS). You’ve got good reason to feel optimistic. These medications have been helpful in avoiding MS relapses and easing symptoms. It’s a good idea to share that optimism with your loved ones. Just also remember to talk honestly about the realities of B-cell therapy, and don’t be shy if you need support.

    “When I was first diagnosed in 2009, I was very stubborn and wanted to do everything by myself because it seemed like MS already had taken so much of my independence from me,” says Ashley Ringstaff, who lives just north of Austin, TX. “But I’ve learned that asking for support really doesn’t affect my sense of independence.”

    When you’re thinking about talking to those you’ve chosen to share in your B-cell therapy journey, there are many topics to consider. The risks and possible side effects of B-cell therapy are usually manageable. But they can become painful or serious. Medications should be covered by private insurance, Medicare, or Medicaid but are extremely expensive. You probably can get yourself to appointments (where drugs are put directly into your bloodstream or just under your skin), but you may want a driver for the first couple of sessions. These are just a few of the good reasons to hold nothing back from your support group and employer.

    What Is B-Cell Therapy?

    B cells are white blood cells produced in your bone marrow that make antibodies — proteins that fight viruses and bacteria. That’s helpful, but if B cells cross from your blood into your brain and spinal cord, they can attack nerve cells and trigger MS. B cells also cause inflammation.

    The FDA has approved two medications for B-cell therapy: ocrelizumab (Ocrevus) and ofatumumab (Kesimpta). You take ocrelizumab at an infusion session (usually at a clinic), starting with two appointments within 2 weeks and then every 6 months. Sessions until recently lasted 3-4 hours, but the FDA said in 2020 they can be shortened to 2 hours. A doctor can show you how to give yourself an ofatumumab shot at home, starting with three shots over 2 weeks and then monthly.

    Should You Expect Side Effects?

    Sometimes, people with MS have a negative reaction to infusion medications. They may get a cough, fever, or chills, swelling in their hands or feet, red and itchy skin, or feel faint or tired. You should tell a doctor right away if you get any of these symptoms. People who take ofatumumab may get redness, pain, itching, or swelling where the needle goes in.

    Also, the B-cell medications can produce various side effects. With ocrelizumab, just a few of these commonly include:

    • Hives, itching, or skin rash
    • Nausea
    • Headache
    • Fever
    • Back pain or body aches
    • Blurred vision

    Ofatumumab also has a long list of side effects for which you should call a doctor right away. A few of them are:

    • Fever
    • Headache
    • Muscle pain
    • Chills
    • Fatigue

    But everyone is different. Brian Phillips of St. Louis, who was diagnosed in 1998 and is an active public speaker about living with MS, says his only reaction to ocrelizumab is mild fatigue the day after infusion. Ringstaff says she feels “a bit awake and wired” from taking Benadryl at the start of infusion and then gets a little tired after receiving ocrelizumab. “Other than that, no side effects, and I don’t get sick,” she says.

    How Do You Start a Conversation?

    But neither of them could be certain B-cell therapy would go so smoothly before they started. As she had other times when she changed MS medications, Ringstaff had a sit-down in 2017 with her husband (a former EMT) and mother (a former RN) before starting with ocrelizumab. She also included the older of her two sons (now 15).

    “We were evaluating the medication, and I wanted to talk about what will work best with me and what I’m most comfortable with,” she says. “You have to do what is best for you, but you also need to take their feelings into account.

    “I needed support from my family, for them to be knowledgeable, because I do get fatigued. You can tell when I am coming up on my infusion date and needing it. Then, and right after infusion, they don’t expect me to have a full energy plate to do the things I normally do. I do crash by the end of the day.”

    Phillips takes a different path that works for him. “My wife, family, and friends are there if I need them,” he says. “If I needed their support, I absolutely would reach out.” But Phillips prefers to have a detailed talk with his neurologist, whom he trusts very much, and make a joint decision with her on medication.

    “I know some people don’t tolerate Ocrevus very well,” he says. “But for me, if you compare this to when I was on other medication and getting an injection every other day, this is cake in comparison.”

    When Should You Let Work Know?

    Both Phillips and Ringstaff talked with their employers right away when they started B-cell therapy. They suggest others do the same. Phillips works part-time in a call center. He gets disability payments because he is legally blind. He takes a bus to work and to infusion sessions.

    Ringstaff’s boss at a urology practice in Austin was supportive and told her not to come in if she was too tired after infusion. But she usually schedules infusion appointments for 7:30 a.m., works on her laptop in the chair, and goes to work right after to avoid taking sick days. She drives herself to and from appointments.

    Should You Worry About Cost?

    If you don’t have health insurance, the price tag of B-cell medications can be a topic that you wouldn’t want to keep to yourself.

    Ocrelizumab is not priced online because you can’t get it from a pharmacy. The manufacturer’s website says the annual list price can be more than $68,000. The low online price for ofatumumab is $6,932 per dosage. Fortunately, most private insurance plans, Medicare, and Medicaid cover these drugs.

    But that still leaves co-pays, which can really add up. Lately, Ringstaff’s family already meets their health plan’s annual deductible just from her sons’ sports injuries. So co-pays for her medication haven’t been an issue. Even though Phillips gets health coverage through his wife’s plan, a Missouri pension law qualifies him for Medicaid because of his blindness. He covers co-pays with those monthly payments.

    For people with MS who aren’t as fortunate, it’s always a good idea to look into whether the medication manufacturer offers co-pay assistance. Also, the National Multiple Sclerosis Society lists a number of patient financial assistance programs on its website.

    Being Direct Is the Best Approach

    As with any medical treatment, being totally open with your family and friends about the potential benefits, and possible difficulties, with B-cell therapy is the right way to go. As her sons have gotten older, Ringstaff has found it easier be up-front.

    “They know I’m doing a lot better with MS than I was years ago, but they also know to expect the unexpected,” she says. “A lot of outside elements can affect me as well. They’re very understanding and will be my rock when I need them.”

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  • How B-Cell Therapy Affects MS

    How B-Cell Therapy Affects MS

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    After Cherie Binns had breakthrough multiple sclerosis symptoms while being treated with an interferon drug, she weighed her options carefully. 

    In the end, her neurologist prescribed rituximab. It’s a type of B-cell therapy, which gets its name because it targets the B cells that cause nerve damage when you have MS.

    Binns, a 69-year-old nurse who works with MS patients in Wakefield, RI, says she has far fewer side effects than she did with the interferon medication. After a year and half on rituximab, she noticed improvements in her left-sided weakness, thinking problems, fatigue, and hand tremors. All are minimal now. The only side effect she had from rituximab was itching, which she controls with an antihistamine.

    “There’s a lot of discussion in the MS community about the fact that people can live far more normal lives with a less intrusive therapeutic regimen,” she says.

    Kelly Eichman, 40, had tried four other disease-modifying drugs since being diagnosed with relapsing-remitting MS in 2009. Then she started B-cell therapy with a B-cell therapy drug called ocrelizumab.

    “Although I have only recently begun the biannual treatments, I am tempted to call it my ‘miracle drug,’ as I have not felt healthier since years before my MS diagnosis,” says Eichman, who is from southeast Minnesota.

    How B-Cell Therapies Work

    This therapy uses drugs called monoclonal antibodies to attack your body’s B cells. These white blood cells normally work to support your immune system. But when you have MS, they can harm nerves in your brain and spinal cord.

    By destroying these cells, B-cell therapy keeps your MS from getting worse. It’s effective against relapsing forms of MS, the type where you have flare-ups from time to time, followed by periods of no symptoms. It also works to slow down primary progressive MS. That’s the type that gradually gets worse over time.

    B-cell therapies can’t cure MS. But by slowing it down and preventing relapses, they can reduce disability and improve quality of life.

    What B-Cell Therapies Are Available?

    So far, the FDA has approved two B-cell therapies for MS:

    • Ocrelizumab (Ocrevus) in 2017. You get this through an IV at a hospital or doctor’s office. It’s used for relapsing types of MS as well as primary progressive MS.  
    • Ofatumumab (Kesimpta) in 2020. You or someone else can give you a shot of this drug at home. It’s used for relapsing MS and secondary progressive MS (in which you have relapses, but your condition still gets worse over time).

    Doctors also use rituximab (Rituxan) to treat MS. It’s mostly prescribed for blood cancers like non-Hodgkin’s lymphoma. It’s not yet FDA-approved to treat MS but is often used “off label” for that purpose. You take this medication through an IV at your doctor’s office.

    Who Gets B-Cell Therapy?

    B-cell therapy may not be the first MS treatment you try. Some doctors start with more traditional MS therapies, like interferon, says Ben Thrower, MD, medical director of the Andrew C. Carlos MS Institute at the Shepherd Center in Atlanta. Interferons work with your immune system to reduce inflammation.

    Thrower says he tends to prefer more effective options, such as B-cell therapies, for people who’ve just been diagnosed. “I believe that being more aggressive at the onset makes the most sense,” to help people live their lives fully functional for as long as possible, he says.

    But, he says, you must balance these benefits with a higher potential for side effects.

    Possible side effects of B-cell therapy drugs include:

    • Allergic reactions
    • Reactions where you get the shot or IV
    • A higher risk of infections, such as colds and skin infections
    • Headaches

    Some research has found that ocrelizumab may also increase your risk for certain types of cancer, including breast cancer. Ofatumumab has been linked to a rare and serious brain infection.

    Neurologist Robert Bermel, MD, says he favors B-cell therapy for progressive primary MS. It’s the first treatment that’s been shown to keep disability from getting worse in this type of MS. 

    “B-cell therapies are excellent at reducing brain lesions and preventing relapses,” says Bermel, who is on staff at the Neurological Institute’s Mellen Center for Multiple Sclerosis at the Cleveland Clinic in Ohio.

    What Are the Drawbacks?

    Still, B-cell therapy isn’t for everyone. Your doctor will need to check your immunoglobulin levels, which measure how your immune system is working, before you start it. People with chronic infections like hepatitis B and C or tuberculosis can’t get B-cell therapy, Bermel says.

    These drugs can also be very expensive. Before starting one, check with your insurance company to see what’s covered. In some situations, B-cell therapy may cost less than interferon. That was the case for Binns when she switched from private insurance to Medicare.

    B-cell therapy prices may come down in the future, though. Researchers are developing biosimilars (a nearly identical copy of a drug) to rituximab. That’s key to driving down the cost, Thrower says.

    Patients’ Viewpoint

    Years after her diagnosis in 1994, Binns says she became an advocate when she heard Thrower giving talks about newer treatments like B-cell therapies.

    She now has a port in her chest, which gives her veins a break from needles. She has an IV every 6 months, which takes a few hours. She’s able to drive herself there and home, instead of having to get find someone to take her.

    For Eichman, B-cell therapy meant that MRI scans show no new lesions on her brain. Lesions affect how the brain functions. They cause problems ranging from memory lapses to speech difficulties, such as slurring words.

    Binns notes that if you’re considering B-cell therapy, you should make sure you’re up to date on your vaccinations. 

    She’s had three doses of the COVID-19 vaccine, and her body is not yet producing any protective antibodies against the coronavirus. So she wears a mask and encourages others to do so.

    “Once you’ve gotten B-cell therapy, it could be potentially 6 months to a year before your blood cells repopulate and you can build antibodies,” she says. Before starting treatment, ask your doctors what vaccines you should have and how far before your treatment starts should you get them.

    If you’re curious about B-cell therapies, ask your neurologist at your next visit. Your doctor can help you decide if one of these treatments may be right for you.

    Thrower says his practice encourages patients to take part in treatment decisions. 

    “We put all of the information and our preferences on the table, and then see how that matches up with the person wants,” he says.

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  • Christina Applegate:

    Christina Applegate:

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    Christina Applegate has opened up about the difficulties of living with multiple sclerosis, and the signs of illness — such as numbness and a tingling sensation in her limbs — that arose years before her formal diagnosis. 

    “I wish I had paid attention,” she said during an interview with the New York Times published Tuesday, “But who was I to know?”

    Applegate recalls feeling off-balance while filming her Emmy-nominated Netflix series, “Dead To Me,” and struggling during a tennis match before receiving an official diagnosis while on the set of her show. Production shut down for nearly five months as she began treatment for the disease, according to the Times.

    “There was the sense of, ‘Well, let’s get her some medicine so she can get better,’” the actress said. “And there is no better. But it was good for me. I needed to process my loss of my life, my loss of that part of me.”

    Moderator Alyssa Mastromonaco, Christina Applegate, Linda Cardellini and creator Liz Feldman attend “Dead To Me” #NETFLIXFYSEE For Your Consideration panel discussion at Netflix FYSEE on June 3, 2019, in Los Angeles, California.

    Amy Sussman via Getty Images


    While there was a question as to whether filming of “Dead To Me” would be able to resume, Applegate insisted on pushing through by using a wheelchair to get to set and having a friend occasionally hold her legs off-camera. Some changes were even made to the script to accommodate energy and stamina levels during filming.

    “I put on 40 pounds; I can’t walk without a cane. I want people to know that I am very aware of all of that,” said Applegate. 

    MS affects nearly 1 million adults in the U.S., and can be disabling. Most people receive an MS diagnosis between the ages of 20 and 40 and the disease is more common in women than men, according to the Cleveland Clinic, a nonprofit academic medical center. Symptoms can include numbness or weakness in the limbs, electric-shock sensations that occur with neck movements, or tremors. MS can also affect vision and speech, cause dizziness and fatigue, and in cases like Applegate’s, impact one’s general mobility.

    There is no known cure for the disease. But according to Mayo Clinic, treatments can help to speed recovery after attacks.  

    Applegate has been transparent on Twitter about her difficulties living with MS, showing photos of the assistive devices she uses to walk, chronicling the insomnia that’s accompanied her diagnosis, and even showing love to a fellow Hollywood star Selma Blair, who was diagnosed with the disease in 2018. 

    Blair, who was a contestant on the current season of “Dancing with the Stars,” said that recent MRI results prompted her to leave the show, citing “bone trauma and inflammation among rips and tears” that could worsen with continued movement. Blair published a memoir that delves into her illness, titled “Mean Baby,” earlier this year.

    In 2021, Blair starred in a documentary that chronicled her worsening health after her diagnosis, “Introducing, Selma Blair.” Applegate lauded Blair for her transparency, she wrote, “My girl Selma Blair documented the first year. Which is hard.”

    “Being technically disabled is what it is,” Applegate tweeted. “I didn’t know what MS was before I had it. My life is changed forever.”

    Caitlin O’Kane contributed to this report.

    C Mandler


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    C Mandler is a social media producer and trending content writer in New York, focusing on LGBTQ+ issues.

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  • Christina Applegate details multiple sclerosis progression: ‘I’m never going to accept this’ – National | Globalnews.ca

    Christina Applegate details multiple sclerosis progression: ‘I’m never going to accept this’ – National | Globalnews.ca

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    Actor Christina Applegate has lost the ability to walk without a cane as a result of her multiple sclerosis (MS) diagnosis.

    In an interview with the New York Times, Applegate, 50, discussed how filming the last season of the Netflix series Dead to Me was the “hardest thing” she’s ever had to do.

    Read more:

    Julia Roberts says Martin Luther King Jr. and wife paid hospital bill for her birth

    “This is the first time anyone’s going to see me the way I am,” Applegate told the New York Times. “I put on 40 pounds; I can’t walk without a cane. I want people to know that I am very aware of all of that.”

    The Emmy-winning actor revealed her MS diagnosis last year; MS is a degenerative autoimmune disease that impacts the brain and spinal cord. There is a myriad of symptoms, from muscle stiffness to vertigo and bladder issues.

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    Symptoms vary from person to person and in degrees of severity. It’s a lifelong condition with no known cure.


    Click to play video: 'Christina Applegate reveals multiple sclerosis diagnosis'


    Christina Applegate reveals multiple sclerosis diagnosis


    “It’s been a strange journey. But I have been so supported by people that I know who also have this condition,” Applegate tweeted in 2021. “It’s been a tough road. But as we all know, the road keeps going. Unless some a–hole blocks it.”

    Trending Now

    For Applegate, filming the new season of Dead to Me — a dramedy in which she plays Jen, a widowed real estate agent — was no easy feat. She decided to participate fully in the production despite her condition because she felt she had an “obligation” to the story and her on-set colleagues.

    Applegate struggled to work as hard or as long as she’d previously been able to, especially in the heat. She had difficulty walking down the stairs of her trailer and had to often use a wheelchair on set. Some days, Applegate couldn’t work at all.

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    Through savvy on-camera blocking (and the help of a sound technician and long-time friend who held up her legs for certain scenes), the season was completed.

    The New York Times claimed Applegate’s illness is “nearly invisible” on screen.

    Read more:

    Tom Brady and Gisele Bündchen file for divorce

    Applegate told the outlet she wished she had paid more attention to the warning signs of MS, including dizziness and tingling and numbness of her extremities prior to diagnosis.

    Though she claimed to have processed her illness, she has not accepted it.

    “Acceptance? No. I’m never going to accept this,” she said. “I’m pissed.”

    Still, she said she hopes fans of the show will be able to “get past” her change in appearance and enjoy the final season of Dead to Me. 

    “Hopefully people can get past it and just enjoy the ride and say goodbye to these two girls,” she said.

    Canada has one of the highest rates of MS in the world, with an estimated 90,000 people living with the disease, according to the MS Society of Canada. On average, the organization states, 12 Canadians are diagnosed with MS every day, with most diagnosed between the ages of 20 and 49.

    &copy 2022 Global News, a division of Corus Entertainment Inc.

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    Sarah Do Couto

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  • Do Multiple Sclerosis and Alcohol Mix?

    Do Multiple Sclerosis and Alcohol Mix?

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    When it comes to your multiple sclerosis (MS), you want to do what’s best for your body. But you wonder about alcohol. Is it OK to enjoy a drink from time to time? Or is alcohol completely off the table? The answer is a little more complicated than a simple yes or no.

    Don’t Overdo It

    “For most people with MS, the answer is to use alcohol in moderation,” says Jennifer Graves, MD, PhD, associate professor of neurosciences and director of the Neuroimmunology Research Program at the University of California, San Diego.

    According to the U.S. Dietary Guidelines for Americans, that means no more than one drink a day if you’re a woman or two if you’re a man.

    “Regularly having several drinks could worsen neurological damage and function for patients living with MS, but a glass of wine or single beer at dinner is unlikely to cause significant issues,” says Graves.

    Alcohol is neither all good nor all bad. For example, the antioxidants and flavonoids in red wine may actually lower your risk of heart disease, which is a concern when you have MS. But this isn’t a reason to start drinking if you don’t already. These compounds are in other food and drink, says Graves.

    And in case you’re wondering if past alcohol use may have caused your MS, set your worries aside.

    “Based on data available, that’s unlikely,” says Graves.

    Alcohol’s Effect on MS Symptoms

    If you do decide to enjoy an occasional glass of wine or beer, know that it could ramp up certain symptoms of MS. Even one drink can make issues like unsteadiness worse.

    “If you have a lot of trouble with balance, thinking, or memory symptoms from MS, it may be better to avoid alcohol altogether,” says Graves.

    Alcohol can also lead to sleep problems and worsen bladder symptoms. You also raise your risk of other conditions when you drink alcohol, especially if you drink too much. Your chances of certain cancers, high cholesterol, and stroke go up. Some of these conditions can make your MS worse overall, says Graves, so doing what you can to keep them from happening is important.

    Several medications used to treat MS symptoms like pain, headache, insomnia, and depression don’t mix well with alcohol. “Combining these medications with drinks could lead to excessive sedation and health risks,” says Graves.

    Be sure to ask your doctor how your specific treatments might act with alcohol so you know what to look for.

    Short and Sweet

    Remember that everyone with MS is different. Have an honest conversation with your doctor about your habits so you can make smart decisions for yourself.

    It’s likely fine for you to celebrate with a glass of bubbly, add a nice red to your meal, or enjoy a beer while you watch the game. Just know your limits and try your best to stay within them.

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  • How I Took Control of My MS With Healthy Habits

    How I Took Control of My MS With Healthy Habits

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    By Laura Wells, as told to Rachel Reiff Ellis

    When I was diagnosed with MS at 39, I would say my focus on my health was sporadic. I had young kids at the time, and my diet and exercise habits were all over the place. Before kids, I’d jog a few times a week, or get on the treadmill or bike. I’d also work in some weight training. But after the kids came along, I no longer did much regular physical activity. I was focused more on my kids’ schedules and needs than my own.

    Once the kids were older, I began to have more time and attention for healthy eating, but my worsening MS symptoms were a real barrier to moving my body the way I once could. Because of my fatigue and balance issues, I could no longer jog or even go for long walks. So I started trying to figure out what I could do for myself. I decided to turn to yoga — something I used to do years ago.

    I started by going to classes twice a week, but even that got hard for me, because keeping myself steady is so challenging. I was constantly worried that I might fall over and embarrass myself trying to do a Standing Warrior pose. And then I discovered one-on-one sessions. My instructor was so good about modifying any pose I needed help with. She’d show me how to use a wall or chair for support. These changes in my yoga practice meant I could do a little bit of exercise daily, which has turned out to be an important key to my well-being. 

    When I challenge my body to do small spurts of intentional movement every day, it keeps me stronger both mentally and physically. It’s very easy to go down the rabbit hole thinking about all the things you can’t do when you have MS. So if I can do even just 15 to 20 minutes of yoga a day, it can go a long way.

    I’m also fortunate that I live in an area with access to a physical therapist who specializes in MS. She’s been amazing at showing me exercises that can strengthen the weak parts of my legs and help me work on my stability.

    When it comes to healthy eating habits, my philosophy has always been everything in moderation. I know a lot of people who have tried special diets, but I just try to fill my plate with a lot of fruits and vegetables and whole grains, and eat fewer packaged and processed foods. My downfall is my sweet tooth, which I’ve always had. And sugar causes inflammation, which can ramp up MS symptoms. But being aware of how foods make me feel helps a lot. I know that I feel better when I eat a salad for lunch instead of something carb-filled. So I try not to overdo it in any unhealthy category.

    It’s funny, because while MS has worsened my physical balance, it’s forced me to find balance in my day-to-day life. I’ve always been someone who feels guilty if I’m not doing or helping, or being productive. But it’s become clear that it’s not only OK to relax, it’s necessary. Fatigue is one of the main symptoms of MS, and being more mindful of my activity levels is one of the ways I keep my stress low and help manage that symptom.

    It’s no longer an option for me to stay up too late at night or pack my schedule so full that I don’t have downtime. If I don’t take time to sit still and read or listen to music, go for a relaxing stroll, or take a nap, I won’t be able to function. My brain will simply hit a wall. I call it “pea soup brain.” Now, I’m really good about going to bed at the same time every night, and taking a nap every single day. Not a long nap — just enough so my body can finish the rest of the day strong. I’ve learned that you have to take care of yourself before you can take care of anyone else.

    I’ve also found that it’s important to celebrate small successes. The more I can embrace who I am and what I’m able to achieve, the better my mental outlook. If I’m able to do one more set of leg-strengthening exercises today than I was yesterday, that’s cause for celebration. It may not look like much to anybody else. But to me, it’s an accomplishment.

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  • Fighting the Stigma of MS

    Fighting the Stigma of MS

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    By Caroline Craven, as told to Hallie Levine

    I learned I had MS almost 20 years ago, in 2001. I was only 35, yet I couldn’t walk or see without assistance.  Today, I’m thriving. It’s so important for patients with MS to know that their diagnosis is not a death sentence. With the proper treatments, the disease can be controlled, and you can continue to live your best life.

    After my MS diagnosis, I had to reinvent my life. I had to give up my marketing career — I couldn’t work in an office 8 to 10 hours a day with my sensory overload and fatigue. Before MS, I was a whitewater kayaker, mountain biker, and rock climber. Suddenly, I found myself so exhausted I could barely walk from my car to the parking lot.

    I enrolled in a 3-year, double-blind study at the University of Southern California for a T-cell vaccine.  After the study, I was told I was on the placebo. But since I was doing better than most and definitely better than when I was first diagnosed, my neurologist joked that I should be a poster child for MS. I took her advice literally: I became a certified life coach and created a blog, GirlwithMS.com, to provide helpful information on how to live better with MS, including recipes, life hacks, and resources.

    Why There’s Still a Stigma

    It’s actually gotten better over the last decade, especially among medical providers who better understand what it’s like to live with MS. They realize now that treatment for MS involves more than just taking a pill or getting a shot. In order to thrive, people with MS need to learn life skills and get community support. You don’t really know what it’s like to live with MS unless you walk in someone’s shoes. Some of us are relatively physical and able to stay active, while others need wheelchairs.

    Unfortunately, the general public still doesn’t know much about MS. People confuse it with muscular dystrophy, for example — one of the questions I get asked a lot is, ”Are you part of Jerry’s Kids?” One reason that it’s tough to understand is because there are so many unknowns about the course of MS. When you first get your diagnosis, you have no idea if your illness will be invisible to others, you’ll lose your coordination, or if you’ll be confined to a wheelchair.  

    Even when people know what it is, they often have a romanticized view of it. They think of celebrities like Selma Blair. But the public doesn’t see the part where those people have trouble walking from the parking lot into a store, or the sideways glances they get when they use their cane.

    Challenging Misconceptions

    The best way to push back against these sorts of misconceptions is to be straightforward with those around you. As an example, one of my biggest problems is sensory overload. Imagine standing in a room with strobe lights and sound blasting. That’s how I often feel when I’m in a busy environment or interacting with others. I tell folks that my MS is like a battery that I need to recharge often. When I get too tired, I need to take a time out and lie down in quiet to cut down on the sensory overload. When I explain it like this, it helps people understand what it’s like for me.

    In another example, many people with MS are sensitive to temperature. It may not seem that hot out to others, but it may cause you to feel tired, make your vision blurry, and give you trouble with your balance. It’s important for your family, employers, and friends to know things like that. You may have to tell them more than once so they can understand. Don’t be afraid to do that, and to ask for help when you need it.

    How You Can Advocate for Yourself

    The first step is to find a doctor you feel completely comfortable with. Once you’ve found your doctor, keep a running list of questions and notes to run by them when you have an office visit. So many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or we’ve had a very cruddy week.

    I also recommend keeping up with the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). This way, you can discuss promising new treatments with your doctor. You also need to make sure they know about and are on board with any supplements or complimentary treatments you use.

    Change Your Focus for Your Best Life

    Now, as a person and expert living with MS, my work takes me across the country, consulting and speaking to help others with the disease live better. It brings back memories of my early career, when I worked with startup companies, and it’s exciting and inspiring. The bottom line is that MS is a random, progressive disease. We, as people with MS, can’t control where it takes us. But we can focus on how to live our lives better.

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  • Lessons From My Journey With Relapsing-Remitting MS

    Lessons From My Journey With Relapsing-Remitting MS

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    By Darbi Haynes-Lawrence, PhD, as told to Evan Starkman

    It’s been 13 years since my neurologist diagnosed me with relapsing-remitting MS, and I still forget that I’m disabled a lot. I’m 47, but in my brain I’m still a college track athlete who ran marathons on the weekends.

    I’ve always been a big goal-oriented person. I got my doctorate by the time I was 30, and my dream has always been to be a dean of students. I can’t now. I have to be realistic, and that’s meant modifying my life goals. It can be frustrating.

    Sometimes I feel very much like a fraud, in that I could be doing so much more if I didn’t have MS. It’s a daily battle of feeling like I’m not doing enough. Every day when I need to rest for just a little bit, one part of my brain is like: “No. You are so lazy. Look at these other people who can do it without lying down for a rest.”

    Sometimes I give myself a few minutes to be in a puddle of pity. But not for long. I let the negative thought come through. I reframe it. Then I say it out loud: “I am allowed to rest right now. Disabled or not, I’m tired and I’m not going to be any good to anyone if I’m not rested.” Then I allow myself that time, and off we go. It’s rare if I take a whole day off.

    Prepare to Be Doubted

    A number of people have told me, “You don’t look disabled. Why are you using that disabled parking spot?” And it’s like, “Well, give me a second to get out of my car and pull my wheelchair out, and let me show you.”

    The doubt that people had still haunts me. It was a real attack to my self-esteem.

    Sometimes health conditions aren’t visibly obvious right away. They’re “hidden” physically. But the condition is there all the same.

    Question Your Doctors

    Years before I got diagnosed with MS, I was getting completely bizarre symptoms. First the roof of my mouth burned. It was absolutely on fire. Then the right side of my face was sagging. And then it just progressed from there, to the whole right side of my body becoming very weak.

    In my early 20s, I remember beginning to stumble a lot and thinking, “Oh, gosh, this is what happens to you when you go from being a college athlete to only working out once or twice a week.”

    I was also having a difficult time remembering words. It is horrific going from a very large vocabulary to just struggling for the right word at times. 

    After I had my daughter at 30, my strength began to decline quite a bit. Over the next few years, I started choking on my food because I couldn’t chew and swallow well. I also had trouble seeing out of my right eye.

    My doctors said: “You’re a young professional woman. You’ve got a small child. You and your husband have a business. You’re just stressed.” Women often get told “it’s just stress.”

    One doctor told me I was crazy. He was my general physician, and he damaged the trust that I have in myself. He made me doubt everything I was experiencing. I had assumed he would treat me well and be the leader of my medical care team. But it took a lot of emotional battering from this man for me to realize that he was a really poor choice for that role. Eventually I fired him. I wish I would have believed myself that I wasn’t crazy.

    It was my dentist who got me on the right track after I told him that my lips were swollen and the roof of my mouth was burning. Those could be signs of a neurological health condition, he told me. And that’s what prompted me to see the neurologist who finally diagnosed me with relapsing-remitting MS. 

    So, I would recommend that you question and investigate your health care team. And don’t be afraid to fire your doctor. Never let them belittle you just because they have the “Dr.” in front of their name. Keep asking questions. Keep searching for answers. And don’t give up.

    Your Family May Need Help Adjusting

    When I finally got diagnosed with MS at the age of 34, I was relieved to have a name for what I was experiencing. I was also relieved that there was a plan of treatment. I could keep going. My career wasn’t over. I was going to be able to be there for my daughter, who was 4 at the time.

    The rest of my family was terrified. They all grieved the diagnosis, even though I didn’t. I thought: “How do I explain multiple sclerosis to my daughter? How do I explain it to my family? How do we keep moving forward?” I wasn’t finding the information that I was looking for as a mom.

    Eventually I created the resource I didn’t have back then. I wrote A Conversation About Multiple Sclerosis, my first of three children’s books for the MS Foundation. I hope that it empowers families.

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  • Being Transparent About My MS

    Being Transparent About My MS

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    By Mariska Breland, as told to Camille Noe Pagán

    I was diagnosed with multiple sclerosis in 2002, but I’d had symptoms for at least 3 years before that. I’m 45 now, but I was just 27 at the time. Most of my symptoms, like numb fingers or feet, never lasted long and were easy to dismiss. But that year, I got a weird pins and needles sensation in my left thigh, which my doctor thought was shingles.

    Then I moved to Washington, DC, to work as a freelance video and event producer. Soon after I arrived, my vision got weird. I couldn’t really focus, and after a few days, I realized that every time I looked left I was seeing double. I went to see an ophthalmologist, who told me point-blank that I probably had MS. When I started crying, she said in a rude voice, “It isn’t fatal.”

    It was devastating. But I went to see another doctor, a neuro-ophthalmologist who was really wonderful. She said to me, “Listen, Mariska, I see a lot of people with MS, and the vast majority are still walking years and years after their diagnosis.” As a young woman, that’s exactly what I needed to hear. Losing mobility was my biggest fear, and I realized it was time to take action and do whatever I could to keep that from happening. The neuro-ophthalmologist referred me to Georgetown, where I was diagnosed with relapsing-remitting multiple sclerosis (RRMS).

    It wasn’t easy to be open at first. I was interviewing for a job after I was diagnosed, and I really needed better insurance than I had at the time. I recall asking the owner of the company specifically what insurance they offered so that I could see if the MS drug my doctor wanted me to take was on that plan. The employer said “Well, I can’t ask you about your health, but I just want to make sure we’re not buying a lame horse.” He couldn’t legally ask me that, but I needed the insurance, so I was quiet about my MS after that.

    Outside of that, it was easier to just be open about what I was going through. I had visible bruising from medication I was taking. I wasn’t drinking when I went out with friends, either. It always seemed easiest to me to just say why.

    What was harder for me, at least right after I was diagnosed, was being around other people with MS. I didn’t want to hear about or notice their symptoms. I think I was afraid, deep down, that I’d develop the same problems they were having. That would change for me soon enough.

    After my diagnosis, I started practicing yoga right away. I’d read that it was good for MS, and I felt better as soon as I started doing it. Back then, doctors told you not to push yourself or exercise too hard because it made MS worse. Now we know that’s not true. You have to be careful about what you do, of course. But regular exercise can help manage and even ward off some symptoms. And it’s OK to push yourself.

    After doing yoga for a while, I started doing Pilates to get stronger and decided to get certified as an instructor in 2005. I’ll be honest: one of the things that I loved was that I got really strong and fit and people would compliment me about that. It made me feel less like my body was broken.

     

    But that’s not why I stuck with it. Around 2008, I started having MS-related mobility issues. Pilates helped a lot. As I trained, I began to realize that you can train to help your brain and body create ways to compensate for disabilities through things like repetition and sensory feedback. I knew I had to show other people with MS and neurological conditions that this could help.

    I started taking courses to learn the science of neurological conditions. In 2013, I created the Pilates for Neurological Conditions training program. Around that time, my business partner and I opened The Neuro Studio. We offer disease-specific trainings, programs for specific symptoms, and continuing education for fitness instructors. Since then, I’ve taught more than 700 instructors how to teach people with MS, Parkinson’s, and other neurological conditions.

    Even today, many doctors don’t talk about the role of exercise in preventing MS-related symptoms and disability. Very few MS patients get physical therapy. If they do, it’s usually short and simple. Exercise isn’t a magic bullet. But by working on balance and strength over time, you can make a difference in symptoms like leg weakness, foot drop, balance issues, and more.

    I call myself a reluctant advocate. I went from not wanting to be around people with MS to knowing hundreds of them. My life’s work is helping people with neurological disabilities.

    Mariska Breland, a nationally certified Pilates teacher, is co-owner of TheNeuroStudio.com and the researcher and creator of Pilates for Neurological Conditions.

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  • How I Manage Relapsing-Remitting MS

    How I Manage Relapsing-Remitting MS

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    By Ann Marie Johnson, as told to Shishira Sreenivas

    I was diagnosed with relapsing-remitting multiple sclerosis (RRMS) on New Year’s Eve in 2002. I was 32. At that time, I had just started embarking on my career in Brooklyn, NY. I just graduated from grad school and had started my new job, and I was an independent woman. I was always on the move. It’s funny because people often could hear me before they could see me. I’m a petite woman that used to wear 5-inch stilettos. Any given day, you could hear the clackity-clack as I was coming down the street or hallway. Life was pretty good.

    One particular day while I was at work, I noticed that the pen I was using to write my notes with kept falling out of my hands. At first, I was like, OK, what’s going on here? But it kept happening. I started feeling these funny feelings inside of my body. My supervisor was with me that day, so I said to her, “Look, I don’t feel right. Something is not right.” She let me go home and told me to finish up later.

    When I don’t feel good, I make a cup of tea. So I did that and went to sleep. When I woke up, the funny feelings had shifted to waist down. It felt like pins and needles when your hand falls asleep. I also had numbness and my legs didn’t move. I fell to the floor when I tried to move.

    Thankfully my roommate came to help and took me to the ER. There, I spoke to the neurologist. Fast forward a little. After a series of exams, tests, spinal tap, EKG, and an extended trip to the hospital right before Thanksgiving, more than 2 weeks later, after more workup and just a few days after my birthday, I was diagnosed with MS.

    I didn’t know much about it at the time. All I knew was Montel Williams and Richard Pryor had it. And my thoughts were: What does that mean to me? I was just a poor girl from Brooklyn, NY. I don’t have any money, I’m not married, will anybody ever want me? Would I be able to have kids? Will I be able to go back to work? These were the things swirling in my head.

    Use Assistive Devices and Find What Works for You

    As I learned to live with MS, I was also learning what that was going to mean for me. As in what does it mean for my walking? For that I have canes. I use a folding cane, and I have one with wood carving.

    In terms of the emotional aspect of this illness, I figured if I’m going to have mobility devices, I’m going to look good with it. So I got a leopard cane to match my leopard print shoes. For the holidays, I have a black and white cane. I also have my African queen cane. So instead of people hearing me from the clack-clack-clack of my shoes, now they heard me because of the clack-clack-clack of my cane.

    When I have good days, the cane stays in the car. On days when it’s a little challenging, I’ll take it out.

    Strategize and Plan Your Day Ahead of Time

    Different symptoms are definitely going to give you reminders that you have MS. And then depending on what you’re doing in your day, you have to strategize. Because of my fatigue, I don’t really function that well early in the morning. Anybody that knows me, like my friends, they know, “Do not call Ann Marie to go anywhere in the morning!” Because I’m like a wet noodle. I am at my best in the afternoon.

    I also started to write everything down, especially at the doctor’s office, because there was no way I was able to remember everything and notify the doctor. I started to write about things like how I feel or what I ate. I would write about the time and about my temperature. From all of that, I was able to see patterns. Using that, I was able to modify certain things in my life.

    For example, I work long hours. I found that it’s best for me to eat small meals because if I have a big breakfast and then have a big lunch, it exacerbates my fatigue.  If I have small meals stretched out during the course of my day, it maintains my energy level to a point where I can function, and I’m not nodding off at work.

    MS causes me to have frequent urination. I have to be mindful of how I get my fluids. I know I can’t get that cup of coffee in the morning and then travel to get to my destination because I won’t make it. So instead of nursing a drink, I try to drink things in one setting. That way, when it’s time to dispel it, I do it in one shot.

    But again, these were changes I was able to make when I started writing and started seeing the patterns. I was able to make real change in my life. However, I’m still learning.

    Join a Support Group

    The first couple of years were really spent on trying to figure out me and what MS is going to look like for me because everybody’s MS is different. I was looking for information, and I contacted the National MS Society. They helped me get into support groups. Through this, I started to facilitate my own groups. I like to say I took the “I” from chronic illness and added “We,” and made it wellness.

    I found others like me. I could hear others’ stories about how they are coping or exchange little cheat sheets. Find out where to get canes from, or what drugstores have really good canes. Find social media groups or discuss what different diets people are using.

    It gave me the opportunity to discuss or see how this guy works with this or that person and to get tips on how to live with MS. But also, I got to hear about people who travel, or get a doctorate, or get a raise, get married, or have babies. Just regular life events for people who just happen to have MS. That is the greatest level of support, and that really sparked wellness. It made me feel better. And when you feel better, you do better.

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  • Cyclist Will Complete the 2016 BP MS 150 on a “B-Cycle”

    Cyclist Will Complete the 2016 BP MS 150 on a “B-Cycle”

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    Press Release
    –

    Mar 30, 2016


    HOUSTON, TEXAS, March 30, 2016 (Newswire.com)
    –
    Houston B-cycle staff member, Doogie Roux, will join the Clean Line Energy Team for the 2016 BP MS 150. He will complete the ride from Houston to Austin riding a bicycle from the Houston B-cycle fleet. The fundraising ride is organized by the National MS Society and will take place on April 16th – 17th.

    “I’m looking forward to completing the ride on a bike that’s not traditionally used during a ride like this and see how I compare to other riders,” said Doogie Roux. “I personally know people with multiple sclerosis so I hope to bring more awareness and raise money by doing something that I’m passionate about.”

    The BP MS 150 is the largest event of its kind in North America where over 10,000 cyclist ride for two days and finish at the State Capitol in Austin, Texas. The bike that Roux will use weighs more than 50 pounds; twice the weight of other bikes used for this type of event.

    “I am so proud of Doogie’s effort to support the MS 150, as well as his decision to ride one of our B-Cycles,” said John Daly, Executive Director of Houston B-cycle “Doogie is not only bringing awareness to multiple sclerosis, but also the values of Houston B-Cycle; riding bikes brings benefits to our health, our environment and our community.”

    The fundraising ride has a minimum of $400 and Roux is currently looking for donations. Anyone interested in helping Roux achieve his goal can make a direct donation on his participant rider page, https://goo.gl/gK73IP. 

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