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What happens when your partner is diagnosed with MS? Guidance for partners/caregivers of MS Warriors

Don and me at my medical school graduation in 1999 (Neither of us ever expected we would confront my MS diagnosis together 10 years later.)

"You have MS."

 

I remember hearing those words, 10½ years ago, from a neuroradiologist in a dark room, huddled around my MRI films. The diagnosis explained my mysterious dizziness and double vision, but was unexpected, raising new questions and confusion. My husband, Don, thanked the radiologist, and guided me back to our car, both of us feeling terrified and overwhelmed. What would MS mean? Could I work? Would I ever feel better? Could I exercise, travel, drive?

 

 

Continue reading this article on the National MS Society's Momentum blog.

 

Please share your thoughts and suggestions in the comments below.

 

 

 
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As Healers, Ending Systemic Racism Is Our Work, Too

I was proud to join other Austin-area physicians recently to call for an end to police violence and institutional racism: White Coats for Black Lives.

I'm embarrassed by my own ignorance sometimes. Sure, I'm a progressive advocate for social justice. I pride myself on treating all my patients with thoughtfulness and compassion, without judgement. But I have a confession: occasionally, I get it wrong.

 

(Continue reading on Doximity

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The Pandemic: Finding joy during quarantine

Clover and I have enjoyed walking several times a week along Shoal Creek, near our house, since the beginning of our quarantine in mid-March. 

In the first few weeks after the coronavirus quarantine began, I would wake up and think, just for a second, that it had all been a bad dream. At first, the pandemic seemed as far-fetched as an apocalyptic movie: an asteroid hitting the earth, an alien invasion.  I would try to stay in that Land of Denial as long as possible, knowing COVID-19 was real, but clinging to the feeling that maybe it wasn't.

 

I've experienced Denial before – at the time of my MS diagnosis in the fall of 2009. It seemed like a refuge, a welcome escape from reality. But eventually, I worked up the courage to face my vulnerability and new normal. Now, most of the time, MS is an afterthought.

 

Will COVID-19 become that way too? Indeed, we are getting used to new routines, to face masks, to virtual meetings. But I feel nostalgic for carefree grocery shopping and dinner with my extended family, and I'm disheartened by news that we aren't likely to return to our old way of life anytime soon. Odds are good most of us are going to continue spending a lot more time at home than we ever have before.

 

I am heartbroken for our world, the lost lives, the lost jobs, the cancelled events, plans, and dreams. But for those of us who are fortunate to be healthy and stuck at home, how do we make it bearable, even fun? 

 

As I have with MS, I am discovering some surprising silver linings, connecting in new ways with my family, and looking for the lessons that come with any big change. Here are some quarantine-survival strategies that I hope may help you, too, make the best of this strange and challenging time:

 

1) Laugh: Escape from the gloomy news and play a game (we like Scattergories and Ticket to Ride). "Chalk Bomb" a friend or neighbor by drawing pictures and encouraing messages on their driveway.  Or enjoy some of the hilarious Internet videos that creative folks have posted about our current situation. Here are three favorites:

        - Saturday Night Live zoom call

        - Family parody of Les Misérables, "One Day More"

        - Coronavirus Rhapsody 

 

2) Make a difference: Sewing masks has been a great outlet for many and a way to help us all stay safer. But there are many other ways to help from home.  My kids created a virtual fundraiser for the Central Texas Food Bank and posted it on our neighborhood listserv. Austin's Generation Serve has recommended creative ways for kids to contribute.  And Thrive Global shared a great list of other volunteer opportunities you can do from home

 

3) Declutter and organize your space: If you're stuck home for weeks and months on end, make it beautiful and peaceful. Read Marie Kondo's The Life-Changing Magic of Tidying Up or watch her show on Netflix for inspiration. (Of course, there is nowhere to donate anything, but find a closet or corner to stash discarded items until the beautiful day when you can pass them along to Good Will or a new home).

 

4) Meditate: Mindfulness-based stress reduction (MBSR) meditation is life-changing for many people, teaching us to focus on the present moment and greet each moment with acceptance and care. It has proven health benefits and is an important tool to deal with stress and anxiety. It also can help with sleep, pain, and general well-being. Some online MBSR classes are available. I also like the free app, Insight Timer, for an incredible selection of guided meditations.

 

5) Start a journal: I've kept a daily journal since childhood, and it helps me process events, track any health issues that pop up, and feel a sense of closure and completeness at the end of the day. I think journal-writing is a great stress management tactic and an important way to gain personal insights. We are living through a remarkable time in history, so keeping an account of daily life during this pandemic is particularly meaningful. 

 

6) Take care of your mental health: Connect with friends via phone, walks outside (separated by at least six feet), social media, or old-fashioned letter-writing.  Find a good "escape" book to read. And have fun being at home! Here are some favorite homebound activities: design a photo album online (I like www.snapfish.com, but there are many options), make bread from scratch, do a jigsaw puzzle, start a garden (even if it's on a balcony or window sill), make a scrapbook or collage, or draw or paint (use a favorite vacation photo for inspiration). Also, don't drink too much alcohol (limit yourself to no more than one drink a day for women or two for men).

 

I hope my tips are helpful. Please share what are you doing to create joy and meaning in the comments below.

 

 

 
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MS + COVID-19 Pandemic

I am sheltering in place except for frequent walks in the neighborhood, admiring spring's offerings, including this lovely wisteria. 

Because of COVID-19, many of us who take disease-modifying therapies for MS are stuck in a tricky situation. How cautious do we need to be? How high IS the risk? If we are due for another infusion or dose of medication, should we take it or wait a few weeks? How isolated do we need to be?

 

I just had my infusion (with ocrelizumab) two weeks ago, which suppressed my immune system in order to control my MS. These questions of risk are personal and real.

 

The sad reality is we don't have all the answers. But most MS specialists seem to concur that many MS medications like ocrelizumab – along with alemtuzumab, cladribine, rituximab, fingolimod, dimethyl fumarate, diroximel fumarate, teriflunomide and siponimod – probably increase the risk of viral acquisition and severe illness, if infected. Taking extra precautions seems prudent, especially for those who are also over 60 and/or have heart or lung conditions. Talk with your doctor regarding modifying your treatments, and discuss other strategies to lower your risk.

 

As an MS Warrior, I am used to uncertainty. I don't know when another MS flare will sneak up on me, rob me of some vital function, make just a brief visit or stick around for a prolonged stay.
I'm also used to weighing pros and cons, risks and benefits. As a family physician, I have guided many patients over the years in testing and treatment decisions, and often the course is not clear-cut. In the decade since my own diagnosis with MS, I have worked with my neurologist to choose medications and develop treatment plans. We usually agree, but not always.

 

Add COVID-19 to the mix, and I'm pushed in new, frustrating directions with my decision-making, particularly with social distancing.

 

Just today, here are some of the decisions I have had to make:

  • Can my daughter have a friend over to spend the night?
  • Should I give my husband a hug when he comes home from his shift at the hospital?
  • Since our other spring break travel plan was cancelled, can we safely go on a road trip later this week and stay at an Airbnb or with relatives?
  • Can I go biking with my parents, who are in their 70s?
  • Can I go on a walk with two friends – both physicians who could have come in contact with infectious patients?

 

In my city of Austin, there are just a handful of known cases of COVID-19. But we expect the virus is much more prevalent, and we can't confirm it because we haven't been testing many people.

COVID-19 can be passed to others – usually through respiratory droplets – even by those without symptoms. Without widespread testing, we can't tell who is infected, so we have to assume almost anyone potentially could transmit the virus.

 

Hence the recommendation for "social distancing" – keeping more than six feet away from others (especially if they are coughing or sneezing) and avoiding large gatherings, crowded venues, public transportation and nonessential travel. Social distancing also means limiting our contacts to just a few people and hunkering down at home.

 

For those of us with MS, social distancing is essential to lower our risk, though it can be difficult and downright lonely. I am trying to focus on "safe" activities that allow me to interact with others and get some air, such a taking bike rides or walks outside and connecting via text or on the phone with loved ones. Some of my neighbors are banding together to help those at high risk by grocery shopping or picking up prescriptions. We are all scared, but we will get through this difficult and uncertain time.

 

Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can't control this virus, but I can try to meet each bit of news, each decision, with patience and grace.

  • Wash your hands
  • Don't touch your face
  • Cover your cough
  • Avoid large gatherings
  • Don't go out if you're sick

I will follow the guidelines. I'll keep up with the news. I'll make sure to get enough sleep, exercise, and double down on self-care. And I will also look for silver linings, practice gratitude, and take each day as it comes.

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COVID-19 is wreaking havoc!

I received my Ocrevus infusion last Tuesday. Am I setting myself up for serious illness with COVID-19?

Uncertainty.

 

Take a deep breath. And another.

 

Those of us with MS or another chronic disease are used to living with uncertainty. We don't know when another MS flare will sneak up on us, rob us of some vital function, make just a brief visit or stick around for a prolonged stay. That's the way it is with this bizarre disease, and in the weeks, months, and years after a MS diagnosis, we learn to cope.

 

But COVID-19 is a double whammy.  It is hitting hard on so many levels. First, of course, are the health concerns. While we know this new virus is bad, we don't know how bad, how long it will last, how far it will spread. We think it is worse for people with chronic diseases and/or suppressed immune systems, but we don't know how much additional risk we have, as people living with MS. (I had my Ocrevus infusion last week, potentially reducing my ability to fight infection. Bad idea? I don't know.)

 

We know COVID-19 is less contagious than influenza, but it is more deadly. How much more? Is the case fatality rate 2%? 4%? Much lower, because we aren't testing and counting those with mild or asymptomatic infection? Is it really 15% in people over 80, or even higher when factoring in preexisting conditions? How are survival rates impacted by having diabetes, heart disease, or multiple sclerosis?  We have so much to learn.

 

A second concern is the economic and societal impact. The huge music and film festival, South by Southwest (SXSW), was just cancelled in my hometown of Austin, causing some business owners to panic and creating widespread disappointment among musicians and would-be attendees. Events all over the country are being cancelled or postponed. Schools are closing. Vacation plans are being scrapped.

 

I've been reading about COVID-19 incessantly this week, and my initial sense that the hype and paranoia were unwarranted has shifted. I'm not stockpiling food, I'm not wearing a mask (it won't protect us from infection), and I'm not overly concerned about my own health. But I'm worried this virus is not going away soon. Spread of the infection is likely; containment is improbable. The ability to test more people for COVID-19 is a mixed blessing: Identifying people who are sick allows to us to take action to minimize spread, but it will also lead to a surge in confirmed new cases. Even if the situation isn't worse, new testing capabilities may make it look worse.  

 

How do we weigh the risks and benefits as we make decisions in the coming weeks?

 

My 12-year-old daughter, Clara, often asks questions like "Would you rather eat a cup of live cockroaches or spend the night in a cage with hungry lions?" In my case, the immediate choice is not quite as terrible: Would you rather give up a much-anticipated spring break trip to California or gamble in a game where the odds are unknown and the consequences could be quarantine, serious illness, or absolutely nothing?     

 

Uncertainty can be infuriating, even paralyzing, but as I have with MS, I will try to let it be a teacher and guide. I may not know what this week will hold, but I can be present in this moment. I can't control this virus, but I can try to meet each bit of news, each decision, with patience and grace.

 

Wash your hands – don't touch your face – cover your cough – don't go out if you're sick.  I will follow the guidelines. I'll keep up with the news and probably cancel that trip to California. But I will also look for silver linings, and practice gratitude, and take each day as it comes.

 

P.S. Don't spend all your time reading the news, but for regular, reliable information, here are my best references: https://www.cdc.gov/coronavirus/2019-ncov/index.html  and https://www.nytimes.com/2020/03/08/world/coronavirus-news.html

 

Please share your thoughts in the Comments below.

 

 

 
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Dizziness

Here's a ride I was happy to skip this summer when my family and I visited Tivoli Amusement Park in Copenhagen.

Dizziness is the bane of my existence. It's my most persistent and irritating MS symptom. It's led to a long list of restricted activities: amusement park rides, drinking caffeine or alcohol, cartwheels, reading on a road trip, certain yoga positions.

 

Obviously, none of these activities are essential. But even with strict adherence to my self-imposed "dizziness avoidance rules," I still have those days when I can't escape that woozy, cloudy feeling that I call "dizziness" (because nothing else describes it quite as well).

 

How do I cope? It's not always easy.

 

In the early years after my MS diagnosis, I felt dizzy every minute of every day. Nothing seemed to make it better or worse. I tried everything: medications, physical therapy, dietary changes, more sleep, less sleep, more exercise, less exercise. I was powerless.

 

But gradually, my symptoms lessened. I have relapsing remitting MS, so some improvement wasn't surprising. I also started to discover some ways to manage my dizziness, or even reduce the chance that it would happen at all.

 

For others struggling with dizziness—or any other frustrating symptom, for that matter—here are some suggestions that may help you take your life back:

 

Track your symptoms: For a long time, I didn't really know if my dizziness was tied to sleep, mood, stress or anything else. So, I started to track my symptoms on a scale of 1-10 and the quality of my sleep, level of stress and mood/overall wellbeing. Then I looked for correlations over several weeks. I was surprised that I didn't find much connection, but it was reassuring. If I couldn't sleep one night, I could remind myself that my insomnia didn't necessarily mean I would be dizzy the next day. If you have suspicions that certain foods, situations or activities are triggering (or improving) your symptoms, test out your theory and use that information to make some positive changes.

 

Rule out other causes: Dizziness is not a rare symptom of MS, but it is not the most common either. I have done hearing and visual tests, bloodwork, and have tried allergy medications to rule out other causes. I am now confident that my dizziness is due to MS. Unless your symptoms are an obvious consequence or your disease process, make sure you and your physician have investigated alternate explanations.

 

Trial and error: Although I never want my quest for a cure to take over my life, I have tried a range of treatments to see what might work. For me, acupuncture and restorative yoga provide brief relief. Visual therapy seemed to reduce my overall number of dizzy days. Although I sometimes cheat, avoiding caffeine helps. While I've opted for a mostly vegan diet for other reasons, I know that diet does not play much of a role in my dizziness. Trial and error helped me create the "avoidance rules" listed above, and it also allowed me to identify activities that are unlikely to cause dizziness.

 

Meditate: Nothing has helped me more than meditation to both reduce my dizziness and cope when I have it. I took a mindfulness-based stress reduction (MBSR) meditation class several years ago. I had hoped it might help with stress, but I had no expectation that it would give me a powerful tool to combat my most irritating MS symptom. By meditating for just a few minutes every morning and night, I reduce my odds of feeling dizzy. When I get dizzy, a 20-minute meditation session can sometimes stop my symptoms. Even when I have bad dizziness that won't go away, meditation helps. "This is the way it is right now," I remind myself. I acknowledge it, without judgement, and go on with my day.

 

Practice self-care: Regardless of your symptoms, you can feel better overall by prioritizing self-care. Follow a healthy diet, maintain nurturing friendships, reduce stress, exercise (find a way to get moving that you don't hate) and get enough sleep. If you are struggling with anxiety or depression (which are so common with MS and other chronic conditions), find a therapist who can provide guidance and support. Sometimes by focusing on self-care, you'll find that your prior symptoms will dissipate.

 

Please offer other suggestions in the comments below and let me know if any of my recommendations are helpful!

 

 

 
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The Importance of Preventive Care

Looking for a terrific New Year's resolution? Get caught up on preventive care!

MS had really taken a toll on my new patient. Or so I thought…

 

She came to see me one afternoon in my family medicine clinic. Her son pushed her into my exam room, and I moved my stool to make way for her wheelchair. One of her arms was rigid, useless. Her speech was slurred, and she reported terrible back pain. As an MS patient myself, I was disturbed to see her, knowing that my fate could be similar.

 

"How long have you had MS?" I asked.

 

"Oh, 20 years, at least," she said, pausing to clear her throat. "But I was doing OK until the stroke last year."

 

Stroke? What? It was a stroke that caused all these problems?

 

As I unraveled her story, I learned I was wrong about her MS. Before the stroke, she had been an active hiker and traveler. I don't think she had seen a doctor much either, except perhaps to treat her MS. And I don't think anyone had ever checked her cholesterol.

 

I was startled to see how high her cholesterol was, when I got her test results back a few days later. I immediately started her on medication. Now I had found a reason for her stroke... and a critical reminder to me, as an MS patient: Don't overlook preventive care!

Preventive care encompasses everything from screening for cancer, diabetes, and high cholesterol to getting immunizations, dietary guidance, and smoking cessation. It doesn't get the same attention, headlines, or research dollars as breakthrough medications for advanced cancer or complex new surgical techniques, but it is important.

 

Especially for those of us with MS, preventive care is often overshadowed by more urgent matters. MRIs

may be more critical than mammograms; seeing the neurologist may take precedence over seeing the family physician. I know when I was required recently to go in for a check-up with my primary care doctor, I complained, "I already see so many doctors! I don't want to go to another medical appointment!"

 

But preventive care should be a top priority for everyone with MS, adding quality and longevity to our lives. With preventive care, we can detect and remove colon polyps before they become cancer. We can identify osteoporosis (thinning of the bones) and treat it before a fracture occurs. We can and do prevent millions of infectious diseases every year through vaccinations. And perhaps my patient, had she been screened and treated for high cholesterol years before, could have prevented her stroke.

 

Those of us with MS may also be inclined to blame MS for every ailment, as I started to do when I assumed my patient's disability was due to MS. We shouldn't. For example, fatigue, though so common with MS, can also be due to a myriad of other conditions like anemia, underactive thyroid, depression or sleep apnea. Checking in regularly with a primary care doctor is an important way to ensure other symptoms and concerns are addressed.

 

If I'm stuck with MS, I'm going to make sure I do everything I can to prevent another chronic disease. That means getting up every morning to exercise, making sure I eat at least five servings of fruits and vegetables every day, and sleeping at least seven hours every night. That means seeing my primary care doctor for screening tests and reviewing new symptoms – that may or may not be due to MS.

 

Despite my best efforts to stay healthy, I still got MS at age 36. Illness can be random and mysterious, but I haven't let it stop me from seeking new challenges, prioritizing preventive care, and doing whatever I can to stay at healthy as possible.

  

 
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I don't want to talk about it: Communicating about chronic disease

Cypress trees along Lady Bird Lake during a recent morning run

 

As we gather with friends and family over the holidays, many of us are destined to end up in awkward conversations about our health. Especially if our diagnosis is new, or we have suffered a recent relapse, or transitioned to using a cane or wheelchair, there WILL be questions. We may be able to skirt around the subject, preferring a less-loaded topic, like, say, the impeachment inquiry. Or we may get stuck fielding questions about what it's like to have a serious chronic illness, what medicines we are or aren't taking, and how all of this is impacting our life.  

 

For those of us with MS or another chronic disease, discussing our less-than-perfect health, our feelings about our diagnosis, and our plans for adapting to our changed condition can be painful. We often think about our limitations far more than we'd like, and we don't want extra reminders of our illness from others.

 

I've been at joyful events – holiday celebrations, special dinners, weddings – enjoying carefree time with friends and family, NOT thinking about MS, when someone will ask, with all the best intentions, "So how is your health?" It can be jarring and unwelcome, even though I may feel grateful for their concern. (In fact, if they didn't ask, I may wonder later, "Wow! They didn't even ask about my health!)

 

But for a partner, friend, or family member, our silence can be frustrating, leaving that would-be confidante and support person feeling unappreciated and disconnected. "I just want to help. How can I help when she won't talk about it?" the partner/friend/family member may wonder.

 

Both perspectives have validity. Those of us with a chronic disease may not realize that others who care about us suffer too because of our illness, especially when we are unwilling to talk about it. And yet sometimes those who care overstep and put pressure on us to overcommunicate.

 

So how can we bridge this divide? I've shared some ideas below.

 

If you are the person with MS/other health condition:

 

- Get in touch with your own feelings about your diagnosis. Through journaling, meditation, long walks, counseling, or some other means, sorting out your mishmash of emotions can provide clarity and guide how you want to communicate with others.

 

- While it may feel intrusive or overwhelming, recognize that usually people who are interested in your condition are concerned about your welfare. They want to help. Try to meet their inquiries with gratitude rather than irritability. And don't be afraid to accept help! You don't have to bear this burden alone.

 

- Communicate your preferences, at least a little. If you do not want to talk about your condition, now and maybe not ever, that is OK. But it may be hard for people who care about you to know how to handle the situation. At least try telling them "I know I have this condition, but I don't want to dwell on it. I'll let you know if something big happens with my health, but otherwise, I'd like to move on. I am grateful for your support, and I'd rather spend my time with you talking about other things."

 

- If you have a lot of different people asking for updates and wanting to help, realize, in fact, you're lucky! But if it feels like too much, designate one person who can be your spokesperson and provide appropriate updates on your behalf.

 

If you are the would-be support person, struggling to get your loved one to share her burden:

 

- Don't ask questions at the holiday dinner table. If you are concerned and feel the need to check in on your loved one, find a quiet, private place to do so.

 

- Strive to accept that person where she is in the process of coming to terms and living with her diagnosis. "I am here for you, and I'd like your guidance about what being here for you should look like." You might then make suggestions, especially if you sense that extra help is needed: "Would it be OK if I texted or called you to check in once a week?" "Can I pick up groceries for you when I'm going to the store?"  

 

- Follow her lead – and tell her you are going to do so: "I know it must be hard to live with this diagnosis and the uncertainty it creates. I would be glad to talk about it if you ever want to. But I respect your preference to not talk about it. Please just let me know if something changes."

 

-  Find another outlet for your impulse to "do something." Join a walk, bike ride (like the MS150), or other activity, as a participant or volunteer, to support people with the condition. It's a great way to honor your loved one. The National MS Society, for example, has a wonderful calendar of events filtered by activity and location.

 

MS or another chronic illness is often stressful and can create friction in our close relationships. But it can also strengthen those bonds, especially if the people involved can check in with each other and agree to terms for communicating, accepting the boundaries requested by the person with the condition.

 

I'd be delighted for others to share suggestions. Please add your own tips in the Comments below.

 

 
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Self-Advocacy

As a doctor, I always advocate for my patients. As a person living with MS, now I have to advocate for myself too.

Are you kidding me? Another $749 out-of-pocket… just for lab tests?

 

It was another unexpected medical bill, even more irritating than usual because I had called the lab before the test was done to clarify the cost. The lab had assured me I would pay no more than $200, even if my insurance company failed to pick up the tab...

 

To keep reading, please go to Momentum Magazine's MS blog.

 

 
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I'm on a podcast!

Hiking in Telluride, Colorado earlier this summer. Hiking in the mountains is as good as it gets for me!

A huge thanks to Dr. Errin Weisman for giving me an opportunity to share my story recently on her thought-provoking and informative podcast, Doctor Me First.

 

You can check out my episode, Role-Reversal, and also hear other fascinating interviews with women doctors on topics ranging from "Libido" to "Burn-out" to "Wisdom."

 

Get inspired, and share your comments or feedback below.

 

 
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Coping with an MS Diagnosis

Getting diagnosed with MS was a shock. But I've learned to make the best of it.

"You have multiple sclerosis."

 

The neuroradiologist was calm as he revealed my diagnosis. But I was stunned.

 

Suddenly everything made sense: the constant dizziness, double vision, taste changes. Even the numbness in my finger months before, the cloudy vision earlier that fall—it was all connected. But it was a terrifying and tragic moment, and the days and weeks that followed were some of the hardest of my life.

 

I think my low point was two days after my spinal tap, when I got so sick, I couldn't get out of bed. I was dizzy, weak and exhausted. I wondered if I would ever be able to do ANYTHING again. Previously an active and healthy family physician, I couldn't imagine how to move forward.

 

But I couldn't stay in that dark place. As my symptoms started to improve, I slowly learned to face my diagnosis and accept my fate. I got to know this unwelcome companion, who will be with me for the duration of my life's journey (or until we find a cure!). In the 9+ years since my diagnosis, I've learned to cope.

 

My strategy for living with MS still changes monthly, or even daily. I've learned the best approach is different for all people living with MS, just as MS affects each of us differently. But I think there are some near-universal recommendations that I would humbly share with my fellow MS Warriors:

 

Don't let MS take over your life. Try to stay active and involved in your community, your place of worship, your kid's school, wherever you can feel a part of something bigger and you can make a difference. Make necessary adjustments, but if possible, continue to work, travel and have fun. Your life isn't over.

 

Build and nurture your support circle. Identify the people who will be there when you have a relapse, incapacitating fatigue, or feel the despair that attacks the best of us. I didn't keep my MS a secret. I know in some instances, a MS diagnosis can't be shared without negative consequences, but at least let those close to you know what's going on and how they can reduce the burden of MS a little.

 

Do whatever you can to stay healthy. Eat healthy and exercise. Get enough sleep. Don't smoke. Don't drink excessively or use drugs. See your primary care physician for preventive care and screening tests.
Take a disease-modifying medication. They are NOT full-proof or free of side effects. And they certainly are NOT cheap. But they are the best strategy currently available to slow the natural course of MS. I feel they have been key in my battle against MS.

 

Try some new strategies to cope with symptoms. I tried acupuncture, yoga, balance therapy, and very restrictive diets to no avail before I finally learned that avoiding caffeine and practicing meditation were more helpful than anything else for my chronic dizziness. Everyone is different, and you don't want to spend all your time searching, but a little healthy experimentation may help you find some tactics to feel better and live a more meaningful life.

 

Always have a goal—something to strive for, a reason to get up in the morning. I just finished riding the MS 150 for the second time. I want to get my memoir published. I want to give my daughters a great summer. I'm always working on a new project—it keeps me grounded and sane.

 

Use MS as an excuse to do more and do it now. MS creates even more uncertainty than the baseline uncertainty we all face. Since I don't know how much longer I'll be able to travel or run with my dog or work or swim or volunteer at the homeless clinic or drive my daughter to dance class, I'm doing it all now and trying my best to live in the moment and soak it all up.

 

An MS diagnosis can be a huge shock and disappointment. It was for me. But I've rebuilt my life and even become a little wiser along the way.

 

 

 
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Career + Parenthood + MS: An Impossible Combination?

My daughters, Ella and Clara, surprised me on Mother's Day with vegan pancakes and fruit salad. Despite my inadequacies as a parent struggling with a busy job and MS symptoms, my kids are turning out to be pretty terrific.

My daughters were two and four and a half. Every moment we were together, they wanted to play Candyland or build forts or make cookies out of playdough. When I wasn't with them, I was at the clinic, working a busy job as the director of a health center for uninsured patients. I struggled to help my patients cope with depression or chronic pain, control their diabetes or heart failure, find creative ways to fill their prescriptions. I barely had time to breathe.

 

Then I developed dizziness, cloudy vision, and taste changes. Learning I had MS, I felt like someone caught in a mob who has fallen down and is being trampled on.

 

The diagnosis was serious; the timing was terrible. Already, I was overwhelmed and exhausted. I had no time for hobbies, walks with friends, reading books, or other stress-reducing activities. My own self-care was suddenly urgent and important, and it had to be incorporated into my too-busy life. But how?

 

I made self-care a top priority. If I wasn't healthy, I couldn't be an effective parent or doctor. I had to be innovative and even a bit rigid with some of my self-care strategies. I couldn't play Chutes and Ladders or put together the alphabet puzzle every time the kids requested my participation. But I made it work, and I am thankful to have good health AND two well-adjusted, amazing kids now.  

 

Here are some ways I maintained self-care:

 

1) I exercised (and continue to exercise) every day. I do it first thing in the morning, before anyone else gets up. I bought a used Stairmaster to work out when my kids were too young for me to leave them alone at home. I took them with me in a jogging stroller when they were very young, and I wanted to run. Exercise is my antidepressant and key to my self-care strategy.

 

2) I asked for help. I reached out to friends and family and told them I was overwhelmed. My husband is a hospital-based pediatrician with long hours, often working weekends and evenings. I lined up friends to come over to help me with dinner and bedtimes when my kids were young. Often, they would bring a meal or help me cook. I think a lot of moms think they are supposed to "do it all." But when I admitted defeat, I found the support I needed to get through some tough years.

 

3) I maintained a healthy diet. I'm a vegetarian, and I have raised my kids to be vegetarian. We still eat french fries and mac and cheese sometimes, but we all aim for at least 5 servings of fruits and veggies every day, and I know we are all healthier as a result.

 

4) I never missed a visit or other appointment related to my MS. I have always taken my medications consistently, and I make sure to follow my doctor's instructions. As a mom, I know I can't afford for my condition to worsen; I have to be as healthy as possible for my kids.

 

5) I learned to say "No". I try to ask myself before committing to a new activity if I really have time to take it on, if it will bring me joy, and if it will benefit my family. If not, I usually let it go.

 

6) I learned to meditate. A few years ago, at the urging of some physician friends, I took a mindfulness-based stress reduction class. Learning mindfulness meditation helped me with anxiety, stress, and insomnia. It also helped me accept my MS symptoms and "live in the moment" in a more authentic way.

 

Being a working mom with a chronic condition will never be easy. Some days I am impatient and irritable, and I yell or criticize when I shouldn't. Sometimes I can't even blame it on MS. But after almost 10 years living with MS, I feel grateful that we have more good days than bad, and I'm proud that my kids are growing up to be thoughtful and caring young women.

 

Below, please add any comments, questions, or tips for parenting through difficult times. And check out this video of me interviewing my daughter, Ella, about what it's like to have a mom with MS. 

 

 

 
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Lessons from the Road

The morning of Day #2 was The Best! The "Challenge Route" through Buescher and Bastrop State Parks was the highlight of the MS150 ride for me. 

The MS150 pushed me to my limits, connected me with other MS Warriors and supporters, and brought intense highs and lows. I'm so glad it's over. And I'm so sorry it's over.  Here are some lessons from my weekend adventure, biking over 160 miles from Houston to Austin:

 

·         Pickle juice is really a thing. It is packaged and sold. It is a favorite drink along the MS150, available at every break point. It's supposed to help reduce cramps, and hey, it worked for me!

 

·         My mom is Super Woman. She is 26 years older than I am, and I yet I had to tell her – many times - to slow down so I could keep up during the ride. She never complained, never asked to rest, and never stopped inspiring me with her strength and perseverance. I need to buy her a cape!

 

·         I am not alone. Having MS can feel so isolating. Sometimes I feel like no one understands my struggle to live with my symptoms and the burden of uncertainty that MS has brought. But throughout the MS150 weekend, I met so many people who understood. Thank you, Michelle, Audrey, Reese, Mike, Lansing, Kristy, and everyone else who shared their stories or listened to mine and made me feel validated and valued.

 

·         I don't like a flat road. The first 40 miles of the route, through Houston and its suburbs, is devoid of even a slight incline. It's not hard, but it's boring. I prefer the ups and downs. Without riding uphill, you don't get to coast downhill. (I think there may be a metaphor here!)

 

·         Community is everything. The support from my Tacodeli teammates (especially team captain Lisa Steffek) and the MS150 community gave me hope and helped propel me forward. Bates, Cesar, and Luis drove from El Paso to ride with me. Along the route, I wore my "I Ride with MS" jersey like a badge of honor. Dozens of people offered encouragement, often as they whizzed past me on their bikes.

 

·         Setting and then accomplishing a goal feels great! I welcome the sore muscles and exhaustion because they remind me that I worked hard. For the rest of my life, I always want to be reaching towards a new goal, striving to do more. I encourage everyone to set a goal – something tough, but attainable - and Go For It!

 

Finally, I am overcome with gratitude. Thanks to everyone who donated to the National MS Society in support of my ride. (It's not too late to contribute if you still want to support their amazing work: http://main.nationalmssociety.org/goto/Lisa-and-Libby-Doggett.)

 

Thanks, also, for the encouraging texts, emails and well wishes from so many friends. Each one cheered me up - especially two-thirds of the way through Day #1 when I was ready to collapse.

 

I am so fortunate that I could do this ride, and I look forward to the next challenge.

 

Please share your most important goals below. Or if you rode the MS150 (or volunteered or cheered someone on), share your Lessons from the Road in the Comments below. 

 

 

 
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MS150 2019: I am really up for this?

My mom and I recently completed a 63-mile "training ride" during the LBJ 100 Bicycle Tour in the Texas Hill Country.

After months of training - 6 a.m. spin classes at the YMCA, long rides on the Southern Walnut Creek Trail, and the recent LBJ 100 ride in the Texas Hill Country - I am going to do it again: 168 miles from Houston to Austin during the last weekend of April. This will be my second time participating in the MS150, and for much of the time leading up to it, I've been feeling fine: I got this! But….

Now, as the weekend approaches, I am getting scared. Am I really up for this? I was in better shape last year. Even though I didn't decide to ride until five weeks before the race last time, I was running long distances and working out daily. Also, we had ideal weather on the ride last year - it can't possibly be that good again. And - dare I say it? - I'm sick of training! I've been struggling to get out on the trail. It's grueling and time-consuming. I can rattle off a long list of preferable activities.

But I have reason to hope I can do this again. My MS has been cooperating. I had some increased dizziness earlier this year, but it has dissipated. My recent MRI showed "no changes," indicating no disease progression. My cousin Bates, who helped me through every mile of the ride last year, is coming back again with two friends from El Paso to accompany me. And my mom, my most consistent support person throughout the course of my illness, is riding with me. Nine and a half years ago, she walked me up the stairs of my house, after the spinal tap that confirmed my diagnosis and then made me so sick I couldn't get out of bed. She was with me for my first ocrelizumab infusions. Next week, she will depart Houston with me and 9,000 more cyclists, as we head home on our bikes to Austin. She has trained so well that I will be struggling to keep up.

 

Last year, I was proud to join the ranks of the Top 300 Club of fundraisers, raising more than $7,500. This year, I've more than doubled my fundraising. All that financial support, which goes to the National MS Society's amazing research programs, advocacy efforts, and patient navigator programs, will also be a great motivation for me to finish this race. I am so grateful and humbled by the support from so many people who share my vision of a world free of MS. My trepidation will be my secret weapon: I'll finish this race and make you proud.

 

Thanks to all of you who have supported my race and have lifted me up in so many other ways during my difficult moments these last nine and a half years. If you want to learn more about the ride or make a contribution, please see my fundraising page: http://main.nationalmssociety.org/goto/Lisa-and-Libby-Doggett 

 

 

 

 

 
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Preventive Care, Part 3: Immunizations - Fact or Fiction?

 TRUE or FALSE?

·         Vaccines may cause autism – we don't know for sure.

·         Flu shots are overrated and sometimes actually cause people to get the flu.

·         Immunizations contain toxic chemicals that lead to brain damage in children.

·         Vaccines can trigger immune reactions that often cause autoimmune diseases like MS.

·         Vaccines are a government conspiracy to create profits for pharmaceutical companies.

 

FALSE, FALSE, FALSE!


Immunizations are one of the most important advances in public health of all time. Immunizations save lives, reduce hospitalizations and overall health care costs, and improve quality of life. With rare exceptions, they are safe and well-tolerated. The evidence is clear that they do NOT cause autism or brain damage. The risk – if any - of vaccines triggering an autoimmune disease such as MS is very low and outweighed, in almost every case, by the benefits of immunization. Making sure you stay up-to-date with your vaccines is one of the most important ways to stay healthy.

 

Of course, always consult with your doctor about which vaccines are indicated for you. Live vaccines are not recommended for people on certain MS medications, for example. The National MS Society also provides excellent guidance on their website.  Depending on your age and other risk factors, these are the most common immunizations that are recommended:

 

1) Influenza: Flu shots should be given to virtually everyone, at every age, every year. The flu shot takes about two weeks to kick in, and mild side effects can occur. But flu shots do not cause the flu, and only rarely are they contraindicated. Flu shots are safe, and they save lives and prevent hospitalizations. Did I mention flu shots do NOT cause the flu? The CDC is a great source of additional info

 

2) HPV: HPV vaccine helps reduce the risk of many types of human papilloma virus (HPV) infection, which is responsible for nearly all cases of cervical cancer and genital warts. HPV also can cause cancer of the throat, vagina, vulva, and anus.  HPV vaccination is recommended to all girls and boys beginning at 11-12 years old and to men to age 21 and women to age 26. It dramatically cuts the risk of HPV infection and, therefore, HPV-associated cancers. Last fall (Oct. 2018), the FDA approved use of the vaccine for both men and women up to age 45, though studies of effectiveness in this older age group are ongoing.  

 

3) Shingrix: Hurray for Shingrix! Shingrix is the new shingles vaccine, just released in 2017. It is far more effective than the previous vaccine (Zostavax) at preventing shingles and especially its dreaded and painful complication, post-herpetic neuralgia. The CDC estimates that about 1 million people get shingles each year, and about 15% of them continue to have pain two years later. The Shingrix vaccine, recommended for adults beginning at age 50, is a series of two vaccines, separated by two to six months. It is more than 90% effective at preventing shingles. 

 

4) Td and Tdap: Td is a tetanus booster shot, and Tdap is a combination vaccine designed to protect us against tetanus, diphtheria, and pertussis. Rates of tetanus (an often fatal infection caused by spores of bacteria in dirt and animal feces) have fallen >95% since the 1947, largely due to the success of the vaccine. However, sporadic cases still occur. Those who are not vaccinated or have failed to get the recommended booster shots have a higher risk of infection. Pertussis, or whooping cough, is generally more of an annoyance to older children and adults, but it is a particular concern for very young infants, who can die from pertussis. By vaccinating adults - especially those who have contact with infants - we help create herd immunity and protect infants from what can be a dangerous infection.    

 

5) Pneumonia: Pneumonia continues to be a leading cause of hospitalization and death among older adults. An estimated 900,000 people get pneumococcal pneumonia each year, resulting in as many as 400,000 hospitalizations and 19,000 deaths. For adults, two different pneumonia vaccines are available (PPSV23 and PCV13). Each protects recipients against different strains of pneumococcal bacterial infection. The vaccines are recommended for all adults at age 65, but may be given earlier depending on other risk factors (such as having diabetes, asthma, heart disease, cancer, or being a smoker). They cannot stop all forms of pneumonia, but they cut the risk significantly and save lives.    

 

The adult vaccine schedule has become more complicated over the years. (I think the two pneumonia shots are especially confusing!) But your doctor can help determine which immunizations you need. And you should keep track of your immunizations and help remind your friends and family members get their recommended vaccines as well.

 

 

 

 

 
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Preventive Care, Part 2: Isn't having one chronic disease enough?

I finally made it to the beach this week in Puerto Rico. I spent the week skipping out to explore San Juan in between meetings for work. What a beautiful place!

I have MS. Isn't that enough? Haven't I already received my allotted dose of bad luck regarding my health?

 

Unfortunately, those of us with MS are just as likely as anyone else to develop other chronic diseases. Some of us may even be at increased risk, due to adverse effects of certain medicines and the disabling effects of MS itself, making it hard to stay active.

 

Many chronic diseases – like MS - are beyond our control. We can't do anything to prevent them. The causes are unknown, and the course of the disease is uncertain.  

 

But other chronic diseases, including some of the most common and damaging, are often preventable. While other factors, such as genetics and the environment, play a role, in many cases, our lifestyle choices - especially diet and exercise - can doom us to diseases like diabetes and heart failure or significantly improve our odds of a healthy, long life.

 

(Warning: I'm jumping on my soapbox again.) There IS a magic formula to improve longevity and quality of life. It's not trendy or exciting, but I can't emphasize it enough: Find a way to exercise most – or all – days of the week. Eat a well-balanced, mostly plant-based diet. Don't smoke. Don't drink to excess.

 

AND get tested for chronic disease. As with screening tests for cancer, screening for chronic disease can help identify risk factors and detect disease early, when it is usually easier to manage.

 

Heart disease and stroke are still the #1 and #4 causes of death, respectively, in the U.S. High cholesterol, hypertension, and diabetes all significantly increase the risk for both. Diabetes, which now affects 9.4% of the U.S. population – also can cause chronic kidney disease, blindness, and nerve damage and pain.

 

Screening tests are easy to do, and a doctor can order the right tests and help interpret the results. Here are some of the most important tests that are widely recommended:

 

·         Blood pressure checks should be done routinely at each visit with the primary care physician. Nearly 30% of U.S. adults have hypertension, which increases the risk of heart attack, stroke, and chronic kidney disease. Hypertension is sometimes called the "silent killer" because it usually doesn't cause any symptoms, yet it can still lead to significant damage.

 

·         Cholesterol screening is recommended for most men starting at age 20-30 and women starting at age 30-35, though guidelines vary and other risk factors for heart disease and stroke should be considered.

 

·         Diabetes screening should be done, especially since almost a quarter of people with diabetes are unaware of their condition. The American Diabetes Association recommends screening for type 2 diabetes annually in everyone starting at age 45 and in those younger than 45 with major risk factors.

 

·         Bone density tests are used to screen for osteoporosis, a condition that can lead to hip, spine, and other fractures by causing weak bones. Usually bone density tests are recommended for women beginning at age 65, but they may be considered earlier depending on risk factors. Older men may also benefit from bone density testing, depending on age and risk factors.

 

A couple other screening tests to consider include testing for HIV and screening for mood disorders such as depression and anxiety.

 

I'm stuck with a life sentence of MS, and I can't do anything to change that. But I am doing everything I can to avoid additional disease. I hope you'll do the same. Check out this amazing myhealthfinder app to find out exactly what tests may be recommended for you. And please share your stay-healthy strategies in the comments below.

 

 

 

 

 
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Preventive Care, Part 1: What Is More Likely to Kill Me? Cancer or MS?

Cancer screening detects cancer early and saves lives!

MS may cripple or blind me. It may even cut a few years off my life. But odds are much higher that CANCER, rather than MS, will kill me. No question.

 

Most people with relapsing, remitting MS (the most common type) are in a similar position. Many people with other chronic diseases also have reason to fear cancer. It remains a threat to all of us.

 

According to the National Cancer Institute, nearly 40% of us will be diagnosed with cancer at some point during our lives. Cancer remains the second leading cause of death in the U.S. (only heart disease kills more people).

 

Those of us with chronic disease may be at even higher risk of cancer. My MS medication works, in part, by calming down my hyperactive immune system. Is the trade-off an increased risk of cancer? We don't know. My medicine is too new, and the studies just aren't available yet. But I'm a little bit paranoid.

 

So what can we do?

 

A lot, actually:

  • Don't smoke – SO important!
  • Eat fruits and veggies, 5+ servings a day – more is better. Avoid processed and "fast" foods.
  • Exercise most days of the week – more is better.
  • Don't drink excessively (no more than 1 drink a day for women, 2 for men).
  • Get vaccinated against HPV, the virus that causes cervical and other forms of cancer, if you're under 27 (and possibly even if you're 27-45).
  • Stay up-to-date with cancer screening. 

Cancer screening catches cancer early, and it can sometimes detect pre-cancer before it becomes a serious problem. Cancer screening saves lives! Make it a top priority for your health:

 

- For women: Cervical cancer is caused by the HPV virus and can occur even in young women. Pap smears, to screen for cervical cancer, are typically done every 3 years beginning at age 21. HPV testing may be substituted for or done in addition to a pap smear in women ages 30-65 every 5 years. Pap smears can detect cancer early and can save lives. (Cervical cancer screening can usually be stopped for women after age 65, assuming adequate prior screening.)

 

- For women: Mammograms, to screen for breast cancer, are recommended for all women. Guidelines vary and have changed in recent years, but mammograms are usually done every 1 to 2 years starting at age 45 or 50. The doctor can consider your specific risk factors for breast cancer and help make a decision about when to start screening, how often to screen, and when to stop.

 

- For men: Prostate cancer screening for men, usually ages 55-69, is controversial, but recent guidelines recommend weighing the risks and benefits with a physician.

 

- For everyone: Colon cancer screening - via colonoscopy, stool tests, or other methods - is important for everyone, usually beginning at age 50. There are several different options, though the "gold standard" is usually considered to be colonoscopy. Those with a family history of colon cancer should start screening earlier.

 

- For smokers or former smokers: Lung cancer screening – via low-dose CT scan – is an option for smokers or those who have quit in the last 15 years, who are 55-80 years old. Talk to your doctor to discuss the risks and benefits.

 

For more information, check out the U.S. Preventive Services Task Force, Centers for Disease Control, or the American Cancer Society.

 

And do NOT rely on supplements, vitamins, herbs, or magic beans to prevent or treat cancer.

 

Stay healthy and safe, my friends. What are some of your stay-healthy and cancer-free strategies?  Please add your comments below.

 

 

 

 
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Lessons Learned as a Doctor Turned Patient

 

As a family doctor and self-proclaimed health nut, I thought I'd never get sick. Although I saw patients every day with unexpected illness, with the right combination of a vegetarian diet + obsessive hand-washing + exercise + adequate sleep, I thought I would live to be 100. I knew the secret ingredients, the formula, for avoiding chronic disease.

And then, nine years ago, I woke up dizzy. I thought I was getting a cold that would pass in a few days. But instead of a sore throat and cough, I developed double vision and taste changes.

 

My MRI showed white spots; my spinal tap showed oligoclonal bands. I had MS.

Suddenly, I was no longer the physician, but the patient. I was the anxious woman sitting in waiting rooms, arguing with insurance companies, struggling to understand my doctor's instructions through a foggy, MS-induced haze. The tables were turned, and I hated it. MS, it seemed, was a thief; it had stolen my future, my certainty of health. I was angry. I still am angry.

 

(To keep reading, please go to the National MS Society's Momentum Blog.)

 

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A New Year's Resolution That Could Save Your Life

I try to practice what I preach: This is me yesterday on a morning bike ride in east Austin. Staying fit is one of the most important ways to prevent chronic disease.

RESOLVED: I will catch up on preventive care in 2019!

 

Ugh! Another doctor's visit? More stuff to worry about? More tests and blood work and exams? Groan…

 

Yes, indeed. But your health is worth it! Hear me out.

 

As we consider goals and resolutions for the new year, I want to urge everyone to prioritize health, and especially preventive care. For those of us with MS or other chronic disease, preventive care is often overshadowed by more pressing matters: MRIs, labs related to our medications or chronic condition, visits with specialists.   

 

But preventive care - from screenings for cancer, diabetes, and depression to immunizations, exercise, and even family planning - is important for all of us. While I don't believe a yearly head-to-toe physical exam is necessary for everyone, regular visits with a trusted primary care physician (usually every one to two years, depending on age, health status, and risk factors) is a good idea.  (See more of my thoughts here about the frequency of doctor's visits: https://www.rd.com/health/wellness/doctor-checkup-visits-guidelines/)

 

Over the next several weeks, I'll be writing additional blog posts with details about various aspects of preventive care. But to get started with a healthier new year, I recommend scheduling an appointment with your family doctor or internist to talk about your health-related goals, review recommended screening tests for cancer and chronic disease, and update your immunizations.

 

Here are some priorities for a healthier new year:

 

1)     Catch up on your health screenings: Staying up-to-date with screening tests for cancer and chronic diseases, like diabetes and hypertension, is very important and may even save your life. For all women, testing for cervical cancer (age 21 and up) and breast cancer (usually starting around age 45 or 50) is strongly recommended. All adults also should be screened for diabetes, HIV, high cholesterol, and other conditions, depending on your age and risk factors.

 

2)     Get immunized! Immunizations are not just for kids; they are important for adults of all ages. A flu shot is recommended for everyone, every year. Flu shots do not cause the flu, and there are few contraindications. Tetanus shots are given every 10 years. (One of those should be a TDaP). The new Shingrix vaccine is recommended at age 50 to prevent shingles. Two pneumonia vaccines, PPSV23 and PCV13, are recommended at age 65 (generally separated by a year) but may be given sooner depending on other health conditions and risk factors.

 

3)     Review your family planning/contraceptive choices: If you are of childbearing age, discuss family planning and contraception with your partner and physician. Ask yourself, do you want more children? Are you at risk of an unplanned pregnancy? Ask your doctor, "What are the different options for contraception, and what might make sense for me?" If you want to delay having more kids, ask, "At what point do I risk not being able to conceive? What are the other risks I might face by waiting?" (A huge issue today is that women are delaying having kids until it is often too late. Asking the right questions early may help avoid this problem).

 

4)     Exercise! Exercise has to make the list for anyone trying to lead a healthy life because it is SO important! Developing a daily (or almost daily) exercise routine can do more to improve health than any medication. Talk to your doctor, and set a goal: most authorities recommend at least 30 minutes of moderate-intensity exercise most days of the week. I like to exercise first thing in the morning before my kids get up and before another activity gets in the way. It's a great way to start the day, leaving me with more energy and a sense of accomplishment. Make exercise fun with a good workout mix, fun group class, an audiobook, or exercising with a friend.

 

Preventive care should be a top priority for everyone, adding quality and longevity to life.  What do you think are the most important ways to stay healthy this year? Add your comments below.

 

 

 

 
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The Diagnosis, and the First Year After

Near Santa Fe, New Mexico

Instead of a new blog posting this week, I'd like to refer you to two Quora posts I wrote recently about my diagnosis with MS and the year afterwards. 

 

I answered two questions:

1) How would you react if you were diagnosed with multiple sclerosis: https://www.quora.com/How-would-you-react-if-you-were-diagnosed-with-multiple-sclerosis

 

2) How was your first year after your multiple sclerosis diagnosis: https://www.quora.com/How-was-your-first-year-after-your-Multiple-sclerosis-diagnosis

 

If you like my answers, please upvote them on Quora. And please share your own experiences, questions, and comments below. 

 

 

 

 
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