Community Views: A Magical MS Bag

Life with multiple sclerosis (MS) requires lots of preparation and thought. There is much you need to successfully navigate each day.

We wondered what items, real or imaginary, help get you through a day. We asked community members on our Facebook page to tell us: “If you could create an everyday MS bag (think Mary Poppins pulling a lamp out of her purse kind of bag) that held everything you would need to be prepared for your day, what would be in it?”

You had some “practically perfect” responses!

Plenty of meds to help with flares and pain

Managing MS means keeping prescriptions and over-the-counter drugs with you. Flares and pain can arise at any time. You feel like a portable pharmacy.

  • “Pain killers.”
  • “Advil. Lots of Advil.”
  • “Medical marijuana.”

Tools to help you regulate your temperature

Temperature regulation can be challenging with MS. Many of you frequently overheat and sweat profusely. You would pull items to help you stay cool out of your magic carpetbag. While more of you need cooling items, some of you need items to keep you warm!

  • “Cooling pads.”
  • “My new cooling vest.”
  • “A portable cold shower and ice machine.”
  • “Air conditioning year-round. 2nd-floor condo facing southwest; year-round AC.”
  • “My neck fan.”
  • “Ice packs and cold drinking water!”
  • “A heater.”

Materials that explain MS to others

Often people in your life do not understand the nature of MS. It is wearying having to explain the disease over and over. Several of you wished for the ability never to explain this disease again.

  • “A huge stack of books explaining what MS is to hand people and tell them not ever to talk to me again unless they read the entire book.”
  • “Flyers of what MS is, so I don’t have to explain it anymore.”

Plenty of feel-good items

Comfort items were high on your list of things to pull out of your bag. These items help you feel supported navigating life with MS. Flares with MS are miserable. These items soothe both mind and body.

  • “Sweatpants, sweatshirt, my fuzzy socks, pillow, my softest blanket, Architectural Digest to look at pictures, a plant, my iPad, water, eye mask for sleeping, and my dogs.”
  • “Muscle relaxers, ice packs, pain meds, my teddy bear, phone and charger, and a good book if I can see. Oh, and some snacks!”
  • “Tennis shoes, Dr. Pepper, pain pills, room-temp water, sunglasses.”
  • “My iPad and a martini.”

A bit of magic

Many of you enjoyed using Mary Poppins’ magic in filling your MS bag! It is fun to dream big about what you could pull out of a bag when there are no rules. Your creativity and imagination are impressive!

  • “Fairy dust. For sprinkles of peace, joy, happiness, calm, and healing. And a couple million dollars.”
  • Energy.”
  • “The cool breeze of the NE ocean in summer and the dry weather of the SW in winter.”
  • “A toilet.”
  • “A never-ending paycheck, so I could stop working and tend to my health issues.”
  • “I would pull out a cure for all of us.”

We appreciate all the responses you provided to this prompt! From the serious to the silly, we enjoyed hearing what you would pull out of a magical MS bag. Thank you all for participating and being part of the community.

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MS Relapses: An Evolution of Perspective

By Stacie Prada

Multiple sclerosis relapses are scary for the symptoms they bring, and they’re overwhelming for the individual prognosis. Sharing our history and perspectives on relapses can help each of us gauge how we’re similar and different. It can show us how we are at different locations on similar paths or how we’re not on the same path at all. Anticipating how long my path is, what I may encounter along the way and how quickly or slowly I’ll reach each phase helps me put today in perspective and plan for the future.

Years 1 through 5 after MS Diagnosis were full of relapses, and my primary goal was to not have a relapse.  Those years were full of stress, confusion and frustration. The amount of information to learn and apply was staggering. The reliance on doctors to provide testing and assessment of whether I was having a relapse or not made me feel helpless. My health journals overflow with information to help me make sense of my body. Each relapse felt like failure.

Year 5Monitoring MS Symptoms and Trying to Avoid Relapses
I started blogging, and my lessons learned became more accessible for me to find later. This one is a go-to resource that reminds me to pay attention to what my body needs while accommodating what life requires. 

Year 6I Feel Like a Rock Star!
I was declared “stable and in remission.” I reached a point of confidence where I felt like I could finally tell if I was having an exacerbation or not. I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t. I’d learned my body enough to know which symptoms were normal for me. I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

Year 8When is it an MS Exacerbation?
I documented and shared my mental checklist for relapse self-diagnosis with examples. I still read it whenever I wonder if I’m having an exacerbation.

Year 10Relapse Management
People with MS do not have complete control over whether or not they have a relapse. If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible. Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen. This post includes 13 Guidelines to follow that serve me well daily, then and now.

Year 13, Present Day – Symptoms without relapses: I look back to achieving the highly sought-after status of stable and in remission at year six with fondness and appreciation for the feeling of success. I envy my naiveté thinking that without relapses I’d be safe from disease progression.

The truth is nerves with old lesions can function for a while and give out much later. Some nerve function can repair, but it can also decline causing symptoms to worsen long after the relapse that caused the lesion. 

The majority of people with MS start with relapsing-remitting MS. The statistic that about half of people with MS transition to Secondary-Progressive MS in ten years is based on a time when disease modifying medications didn’t exist. Since these medications are intended to reduce the frequency of relapses and delay disease progression, I’m hopeful I’ll stay in the RRMS phase or take much, much longer than ten years to enter the SPMS phase. Differentiating between what is possible, likely or probable is tough. There are no guarantees, nor are there inevitable outcomes. 

With or without relapses, MS is with me and will shape my future. What I can do is keep doing what I’m doing. Keep learning, monitoring, adapting, and factoring my health into my daily decisions and long-range plans. Appreciate the people on this journey with me, and make sure to have fun along the way. Take very good care, all.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Signs of an MS Relapse

When you have a relapse of multiple sclerosis (known as an exacerbation or flare-up), nerve signals are disrupted due to damage in the brain or spinal cord. As a result, you may experience new or returning symptoms. An MS relapse is defined as one lasting longer than 24 hours and occurring at least 30 days after any previous relapse. The duration, severity, and symptoms of relapses are all different. Here are a few common signs of an MS relapse.

Weakness

Normal messages from the brain to the body are disrupted when the protective covering of nerve fibers is damaged. When such signals are disturbed, the body stops working properly. Things you used to do easily, like opening a jar or turning a doorknob, can seem challenging during a relapse. You may be experiencing a relapse if you have sudden or worsening weakness that does not go away.

Vision Impairment

It’s possible that you’re starting to relapse if your eyesight is blurry or you’re seeing double. As the optic nerve becomes inflamed, some people lose their depth or color vision. Vision issues can be caused by taking a hot shower or bath, or by a viral infection like the flu, but they are just momentary and should go gone within a day.

Numbness

One of the most typical indicators of a recurrence in multiple sclerosis is numbness. It’s possible to lose so much feeling in your hands or other affected body parts that it’s difficult to use them. You might be unable to write or hold a cup of coffee. Please pay a visit to your doctor if your numbness is new or getting worse.

Cognitive Challenges

It’s aggravating to lose track of where you put your vehicle keys or to have to reread the same phrase several times simply to grasp the meaning. MS can impair your mind in a variety of ways, especially as the disease develops, affecting with memory, focus, language, and information processing. Any new difficulty thinking clearly or recalling past events could be a  sign that you may be experiencing a relapse.

Feeling Dizzy

It’s uncomfortable to feel lightheaded or unstable on your feet, but it’s a frequent symptom of MS relapses. Damage to the areas of your brain that control balance causes dizziness. In the short term, there are medications that can help relieve the ‘room is spinning’ sensation, but if it lasts longer than a day, you may be experiencing an MS relapse.

If you suspect that you are experiencing an MS relapse, please reach out to your doctor to share your concerns. What you are experiencing could possibly be signs of an MS relapse.

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What is this?

By Doug Ankerman

Several months after I was bestowed with my MS diagnosis, I hit a rough patch.

My legs were weak and wobbly. My balance off-kilter. But the worst, was my vision.

My focus would go in and out. While bright lights turned me into a shriveling shrew.

Oncoming car headlights forced me to wear sunglasses at night. Not in tribute to 80’s pop-star Corey Hart, but because the glare was blinding.

(Yeah, I continued to drive because I was young, dumb, and bull-headed.)

What was I experiencing? A relapse? A flare? An exacerbation? Frankly I didn’t care what it was called—all I knew was that I was terrified.

My mind spun wildly. Was my condition here to stay? Was this my new life? Did Corey Hart have MS, too?

Lucky for me a three-day bender of IV steroids (and with it, the taste of sucking on an iron popsicle) helped put things back to normal. Well, as normal as MS could be.

Time passed. Relapse-free. But multiple sclerosis continued a slow, gradual nip and tuck at my faculties till doctors gave me the title of being “secondary-progressive.”

Which was fine. Whatever. It was just name to me. Some may think my outlook is trite but I believe when one has MS, you toughen up. You learn to deal with every situation. And take nothing for granted. You appreciate small victories. Cherish every moment. Live each day like crazy. Because when you have MS, you know how quickly things can change.

If you think you are experiencing a MS relapse, talk to your doctor first. But also remain calm. Breathe deep. And if you can avoid it, don’t wear sunglasses at night.

*Doug writes silly stuff about MS and other topics on his humor blog at myoddsock.com.

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Cinnamon Apples

What a perfect side dish to make in September!  Maybe you could even go apple picking.

These Cinnamon Apples are a quick and a terrific way to add a fruit to your table this fall season. Great to top on ice cream, waffles, and granola.

Ingredients

  • 2 Tablespoons of butter
  • 5 Medium apples peeled and diced
  • 1 Tablespoon sugar
  • 2 Tablespoons ground cinnamon

Instructions

  1. In a large skillet melt butter.
  2. Add in medium apples and coat with butter.
  3. Sprinkle in the sugar and cinnamon and stir.

Cook on medium heat for 10 minutes until the apples become soft.

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Could This Be A Relapse?

On MSAA’s Helpline we often hear questions about MS relapses and what constitutes a relapse. Individuals ask whether the symptoms they are currently experiencing are just due to their MS or if an exacerbation of symptoms may be occurring. These are great questions that warrant valid and informative responses. The challenging piece of this, on the part of the healthcare professional at times, is helping to identify a true MS relapse from a pseudoexacerbation.

To be diagnosed with a true relapse, there must be certain factors at play. Individuals will either experience new symptoms or a worsening/recurrence of existing symptoms. These acute symptoms have to be present for at least 24-48 hours, without signs of other infections or fevers. This is where it can become tricky identifying a relapse from a pseudoexacerbation. Because with the latter, one can experience a temporary worsening of symptoms without inflammation or nerve damage occurring. A pseudo flare can result from illness/infection, fever, stress, heat sensitivity and other factors.

It’s important to discuss these differences with your healthcare team so that you can better communicate if you’re feeling any changes in your symptoms. Ask your doctor what signs you should look for if a relapse may be present, and when you should reach out to their office for assistance. Talk about ways a relapse could be treated and managed if it occurs. And make a plan for what you should do if you’re not able to get in touch with your doctor’s office. Some individuals will seek emergency medical services if needed when they’re experiencing worsening symptoms. So ask your doctor if/when you should seek care in this manner. Asking questions about MS relapses can be an integral part of your overall treatment plan and follow-up care.

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Postpartum Relapses

By Alene Dover

Did you know that you can be at an increased risk of a relapse after you deliver a baby?

This was the message that I heard as I was trying to fulfill my dream of becoming a mother.

It didn’t help that I was 40 years old at the time, and already felt that I had age stacked against me. Now, I had to add on the risk that MS could cause to my health postpartum.

I needed to understand and gather the facts.

Was this in fact true?

If so, was there anything that I could do to reduce my risk of a postpartum flare?

And once I had a confirmed pregnancy, this quest for the truth became deeply personal.

I started with my most trusted resources – my neurologist.

Not only is she highly trained and stays on top of all the latest research, but she also knows me and my body.

I was relieved when she said that the risk of a postpartum relapse had more to do with my risk of a relapse pre-pregnancy. If I was at a high risk of a flare before I got pregnant, then, yes, I could likely experience a flare after delivering my baby.

However, if my disease activity was stable for at least six months prior to conception, that was a valuable indicator that I wasn’t as likely to experience a postpartum flare.

This was further motivation for me to best manage my diagnosis of relapsing-remitting MS.

Thankfully, I have done a lot with diet and lifestyle to manage MS. As a result of this work and my doctor’s recommendations, I’ve had five years of stabilization. The odds were in my favor.

That said, I’m not a gambling girl.

What else could I do?

My neurologist shared that exclusive breastfeeding can further reduce my risk of a postpartum flare. Breastfeeding is a personal decision that each new mom can decide if it’s the right decision for her and her family, but certainly knowing this big perk that it offers is encouraging for us new moms in the MS community.

Beyond this valuable information from my neurologist, I also chose to prioritize three other factors that I attribute to helping me to managing MS. 

Vitamin D

During my initial bloodwork, my vitamin D levels were low, so I chose to supplement with the guidance of my doctor and get outside as much as possible during pregnancy.

Food

If I wasn’t motivated enough by the fact that my body was creating a new life, I was motivated to keep my body healthy so I could be an active mom once she arrives.

Stress

With all the preparations and anticipation, I had to be extremely intentional with managing stress. Stress doesn’t do our body – especially MS – any favors. So, gave myself grace during pregnancy, practiced yoga and mindful breathing.

If you’d like to follow along on my pregnancy journey, you can join me on Instagram at www.instagram.com/lesspharmmoretable or at www.lesspharmmoretable.com.

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Barbara Dixon – September 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase. We receive many wonderful submissions from across the country and are delighted to share the work of these artists and their inspirational stories with you, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Barbara Dixon of Woodstock, GA:

Barbara Dixon created this artwork entitled "Table Manners"
“Table Manners”

About the Artist – Barbara Dixon

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Ask the Expert – MS Relapses

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: How do you determine when a relapse is severe enough to be treated with IV steroids versus waiting to see if the relapse will go away on its own? Also, if a patient does not receive IV steroids, what other treatments or changes in lifestyle may be recommended for a less-severe relapse?

Answer: Clinicians vary widely in their threshold for using steroids for relapses… and patients vary widely in their desire to be treated with steroids for relapses. The most common use of steroids is for a relapse that interferes with function. For example, severe vertigo, weakness, or gait dysfunction are common symptoms that can greatly interfere with function.

However, it’s important to know what steroids can and cannot do for a relapse. Steroids shorten the recovery period, but do not significantly change the outcome of the relapse. Steroids also have a wide variety of potential side effects, including annoying symptoms such as insomnia… or more severe side effects such as gastrointestinal bleeding and aseptic necrosis of the hip (aseptic necrosis is a serious condition that weakens the bone). So, as with all medications, the potential risks need to be balanced with the potential benefits. In addition, while steroids given orally or intravenously are the most common treatment for relapses, ACTH and plasmapheresis may be used as alternatives in certain instances. 

Whether or not steroids are used, relapses are disconcerting. This a time to emphasize rest and stress reduction. Also, it’s important to discuss any relapses that occur, with your clinician, to determine the right course for you. It is a time to consider not just the treatment for the relapse itself, but whether your disease-modifying therapy (DMT) is working optimally. Taking into consideration the severity and frequency of your relapses, your neurologist can advise you on whether or not it is time to consider a different DMT for your MS.

Barry A. Hendin, MD, is a neurologist and Director of the Multiple Sclerosis Center of Arizona. He is also Director of the Multiple Sclerosis Clinic at Banner University Medical Center and Clinical Professor of Neurology at the University of Arizona Medical School.

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