The Confusing World of MS Relapses

MS relapses continue to be one of the most notorious conundrums within the MS space and community today, which is one reason why the MSAA has made MS Relapse Management one of the MS Awareness Month activities this March. Many individuals living with MS question their symptoms and if they relate to relapses or not on a daily basis, no matter how long they’ve been diagnosed, because this issue remains a head-scratcher to those affected. This occurs because MS relapses can be difficult to diagnose, they’re unique to each person (like many other factors with MS), and they can sometimes be pseudoexacerbations and different from a “true” relapse. Several issues can influence whether or not a true relapse is occurring, these include other illnesses or infection, heat, stress, fever, and exercise. So how do you determine what is a relapse vs. a pseudoexacerbation vs. something else? This is a question that concerns many from day to day.

For a relapse to be considered there has to be certain signs and evidence pointing to it without other factors involved like those mentioned above. Symptoms may present as a worsening or recurrence of existing symptoms and/or new symptoms and need to be present for at least 24-48 hours. This is hard for individuals to distinguish sometimes, especially if it’s a symptom they’ve had before but maybe not recently, if they’re not sure that it’s an actual symptom issue, or if it’s a symptom related to MS at all. Another question that comes up often is how long do relapse symptoms last? The length of time can vary from days to months, again making it hard to know the exact ins and outs of relapses and all they entail. These are the type of great, valid questions to ask the doctor when and if the opportunity presents itself because it’s something many face and are unsure about.

Talking to others living with MS can also help to validate some of these questions and concerns too, to gain feedback and perspective from those dealing with the same types of issues. My MSAA Community, MSAA’s online peer support forum where those affected by MS connect with their peers, is one platform that can be used for this outreach. Additional information about MS relapse management can also be found through the MSAA’s online MS Relapse Resource Center and MS Relapse Toolkit publication.

To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live Ask Me Anything” event with Annette Okai, MD, today, March 12, 2018 from 6:00 – 7:00 pm Eastern on My MSAA Community. And on Tuesday, March 13, 2018 from 8:00 – 9:00 pm Eastern the MSAA will be hosting a free Live Webinar “Helpful Tools for MS Relapse Management”  featuring Elizabeth Crabtree-Hartman, MD. Be sure to join in!



New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

By Stacie Prada

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

  1. Indicators, triggers and causes
  2. Preventative measures including lifestyle choices, nutrition and activities
  3. Treatments including prescriptions, exercises, and natural remedies
    – Pros
    – Cons
    – When it’s effective
    – When it’s not effective
    – Why I choose this (or don’t)
  4. Experiences with this issue – what’s worked or failed
  5. Theories for why my body reacts a certain way – correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

  • Tracking calendars of health data and disease-modifying drugs
  • Notes I’ve taken at health appointments
  • Physical therapy treatments and exercises
  • My memory
  • My friends’ memories – often they recall things for me that I’ve forgotten
  • Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down
  • Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I’ve already tried, what works, and what hasn’t worked. I won’t need to start from scratch with each new provider.

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

Condition: Vertigo and dizziness with nausea

  1. Indicators, triggers and causes: crystals in ear out of place
  2. Preventative measures: none
  3. Treatments: Epley Maneuver to put crystals in ear back in place
    Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
    Cons: none
    When it’s effective: When dizziness is caused by ear crystals out of place.
    When it’s not effective: If dizziness is caused by something else.
    Why I choose this for now: It’s an easy fix.
  4. Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.

Condition: Fatigue

  1. Indicators, triggers and causes:
    – When numbness intensifies or spreads from the usual areas
    – Spring and Fall when the seasons change
    – Less daylight in winter
    – More obligations than usual after work or on weekends
    – Workdays that involve constant personal interaction without breaks
    – Relationship stress
    – Big events – both happy and sad!
    – Long periods of added stress
  2. Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
  3. Treatments:
    1. Coffee/caffeine:
      Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
      Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
      When it’s effective: For minimal to moderate fatigue.
      When it’s not effective: When fatigue is extreme.
      Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
      Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
    2. Rest:
      Pros: It’s helpful
      Cons: It’s isolating, it can conflict with life obligations.
      When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
    3. Modafinil (Provigil):
      Pros: It’s effective
      Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
      When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
    4. Exercise:
      Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
      Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
      When it’s effective: When I’m not injured or severely fatigued.
    5. Organization & Prioritization:
      Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
      Cons: It takes a lot of thought and practice to create organization methods.
      When it’s effective: Pretty much always.
    6. Blue light
      Pros: Non-invasive
      Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
      When it’s effective: Fall and winter when the days are short where I live.
    7. Limit activities
      Pros: Helps free up time for rest and sleep.
      Cons: It can get depressing and make me feel like I’m being punished.
      When it’s effective: When I’m still able to do things that satisfy me emotionally.
  4. Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  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


S-T-R-E-S-S, what does that spell…?

As if the whole year round doesn’t bring enough stress, with the holidays approaching and busy end of year happenings, stress can rear its ugly head two-fold during this time. Stress can have negative effects on anyone’s health, but especially for those living with a chronic illness like MS; this beast can cause additional challenges on other symptoms. That’s why it’s so important and crucial to try and reduce stress when you have any control over a situation and it’s possible to have influence over it. Now this isn’t always the case, because as we all know, life tends to be a tad unpredictable at times so control isn’t always a possibility. However, when you do encounter those moments to change things yourself, make it worthwhile and significant to your benefit. So how can you try to manage stress?

SStay flexible. When things occur that you can’t predict or plan for, the stress we place on ourselves as a result can have real consequences. So try to stay open to change; sometimes it may bring good results.

TTalk to others about the stress you’re feeling. Opening up about what’s going on may reduce the inner stress you’re experiencing if you keep things bottled up inside.

RRest and relax when you’re able to. Your body is stronger at combating stress and illness when it receives the rest and care it requires.

EEnjoy simple pleasures and special moments when you can. Life goes by so fast, so make sure to take in the joyous times and happy occasions to hold onto if and when stress surfaces again, it can aid in the fight.

SSocially connect to others who may have had similar stressful experiences and challenges—it can help to learn some different ways to cope and to also know you’re not alone in this.

SSlow down. There’s no need to try and act like a superhero constantly. We are only human. Take time for yourself, do what you can and are able to, and don’t place unrealistic expectations on yourself. You’re already doing your best!

What are some ways you try to reduce stress?                        


MS Symptom Changes

In keeping with the theme of ‘change’ during this month’s MS Conversations, I wanted to talk about MS symptoms and how they can differ for those diagnosed. MS often comes with its’ own agenda and unpredictable course for those affected, often making it difficult to anticipate what symptoms can arise and how they can vary from day to day. And because each person’s experience differs greatly with MS, it’s challenging to try and compare situations in order to come up with guide points and specifics to learn from throughout the disease. The type of symptoms, their range of severity, and their disappearing/reappearing act can all change according to how one’s MS affects them, which further adds to the list of unattractive traits held by MS.

However, because people with MS have a great voice and have been consistent with reporting their symptoms and experiences with the disease, doctors and researchers have an abundance of information to work with for developing more symptom management therapies and treatments that could potentially help reduce these issues. There are several techniques used to treat MS symptoms, but it may take some trial and error along with continued follow-up with a doctor to find what works best and most effectively. While no two MS cases look exactly alike, each individual’s condition brings with it more power and knowledge because it’s so unique, and therefore helps to contribute to the understanding of this ever-changing landscape.


The Unspoken Symptoms

As we discuss various MS symptom challenges during this month’s MS Conversations blog, we wanted to talk about some symptoms that may be more challenging to disclose or discuss with others at times. This week we touched on the condition of PBA and its difficulties, but there are also issues with bladder, bowels, and sexual function that are some of the other more private, less disclosed symptoms experienced by those with MS. These symptoms can feel a bit embarrassing to talk about or discuss with others at times, and for this reason are sometimes the ‘silent’ symptoms one shies away from even discussing with his/her doctor. Even though silent, these symptom challenges can be loud in their presence for individuals.

Symptom issues with bladder can vary in MS. Because MS affects the nerve responses sent to the bladder that control sensations and contractions, symptom issues can include difficulties with emptying and storing, or both. There are several different medication treatments along with diet and fluid management planning that can assist with these symptoms. If you experience these issues, talking to your doctor about your symptoms can help to initiate some type of treatment plan to address these issues and help manage them. If your family and friends are not aware of this symptom and its relation to MS, this can possibly be an opportunity for them to learn more about the disease and its symptoms so they have a better understanding of what you’re experiencing. But remember, it is your body and the information you wish to disclose or not is your decision. However, when others are more educated and aware it helps to keep lines of communication open so that if needed, it may be easier to discuss the issues you’re facing with additional support.

Issues with bowel function in MS can be due to various causes as well, including lesion effects in the nervous system and medication side effects. Constipation and diarrhea are symptoms that can occur and be influenced by diet and medication practices. Discussing these symptoms with your doctor can help to form a plan of action to manage the challenges and decrease their effects. And again, while including those around you in your experiences can be difficult at times, it may increase understanding and communication when you want to reach out to talk about some of these more challenging symptoms.

Being a private and personal matter, sexual dysfunction symptoms in MS may not always be disclosed and talked about, even with one’s healthcare team. It can feel awkward at times to discuss such personal issues and the difficulties you may be having. Both men and women can experience these symptoms which can present in different ways; loss of libido, sensation and arousal changes, or even pain during intercourse can occur. Along with medication management for these symptom challenges, counseling can be another strategy used to discuss sexual issues being experienced. Communicating openly about the problems can increase cohesiveness and support amongst partners and allow for discussion of alternative sexual satisfaction practices. Education around the ways in which MS can affect sexual function and intimacy is an important piece and allows your partner to understand what you’re going through and how you can work together to manage it. That is why it’s important to try and include your healthcare team as well, to recognize and talk about the issues in order to find ways to manage the symptoms.

The symptoms that can occur with MS all have varying degrees of difficulty and challenge they bring to those affected. But it’s important to know that you are not alone in your experiences—others have faced similar obstacles and have also been reluctant at times to discuss symptoms. This is another element that MS unfortunately tries to impose on those affected—to intimidate or shame because of certain symptoms. But this elicits the moment and opportunity where individuals with MS can recognize their symptoms and discuss or disclose them as they wish—to educate others and increase awareness to bring MS out of the shadows and darkness and into the light.

What are some ways in which you’ve managed these unspoken symptoms of MS?


Assistive Technology for Individuals with MS

Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.

Young woman with tablet computer and coffee

Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive  technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.

In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.

What assistive devices have you used? What avenue did you take to receive the device?



Doing What Makes YOU Feel Good When You Have MS


Multiple sclerosis in itself is a complicated and often unpredictable disease. We here at MSAA hear on a daily basis about some of the trials and tribulations that our clients with MS face. One of the most valuable lessons that I have learned in trying to understand the whirlwind of information provided about MS is to find something that is meaningful to you and to your unique situation. With all of the information available, finding something that will make YOU feel good is a priority.

Through social media, websites, and support groups, information is provided about a number of hints, tips, or things that one person may have done to alleviate their symptom, which is wonderful, but unfortunately may not work for everyone. Not every individual with MS will experience the same symptoms and even for those who may, those symptoms may appear incredibly differently.

The point behind the story and the reason for the title is that everyone has their own needs, and each person understands and knows their body better than anyone else. These experiences and feelings are unique to you and should be treated independently to others’ beliefs and thoughts. Focusing and developing ways that make YOU feel good may help to improve your overall day to day.

Explore yourself; perhaps through journaling you can identify some needs that could be met in order to make you feel good. Guided meditation is another way to explore your inner thoughts and feelings. Sitting in a quiet space with yourself and learning about your body and the way that it feels at any point throughout the day can help to center you and focus on what your body needs.

What can you do for yourself today that will make YOU feel good?


What do you wish people knew about living life with MS?

There is often an unspoken understanding among people who have been diagnosed with MS, but it can be quite difficult for those without this condition to fully comprehend what day-to-day life is like for someone with MS. The effects of MS are far-reaching, impacting individuals physically, cognitively, and emotionally, with symptoms often unseen.

We asked the MultipleSclerosis.Net community what they wished people knew about what it is like to live with MS and to share some of the common misconceptions associated with this condition. More than 300 responded with insightful feedback. Here is a summary of the responses we received from our community members:

 MS is real, not an excuse:

  • No one chooses to have MS, nor can we control how it affects us
  • Not all MS symptoms are visible; you may look okay on the outside, but feel like you are falling apart on the inside
  • People often make the assumption that we are faking our symptoms or that we are hypochondriacs because they can’t see what we are experiencing
  • The limitations associated with MS aren’t necessarily visible, and it’s not possible for others to push us past our own limits
  • MS can be both extremely painful and exhausting, and at times we just need to rest

MS is unique to each person and is not predictable:

  • Every patient experiences MS progression at a different pace; it is not a “one size fits all” condition
  • Symptoms can change daily, or even hourly
  • Having MS can be a roller coaster ride with ups, downs, twists, and turns, but there is nothing fun about it
  • It is impossible to understand what it is like to live with MS unless you actually have it
  • It may seem like MS is trying to take away your self-worth every day by slowly making you unable to do the things that you were able to do yesterday
  • Even if yesterday was a particularly difficult day, today may be better
  • MS can knock you off your feet – literally and figuratively

It can sometimes be both stressful and depressing to have MS:

  • MS can take away our dignity by slowly and quietly taking away our mobility and cognitive thinking
  • MS is a multifaceted condition that can be incredibly difficult to live with; it not only affects us physically, but mentally and emotionally as well

The effects of MS are constant and can impact more than just the individual with the diagnosis:

  • We never stop thinking about our MS, even when we are feeling well
  • MS diagnosis can be devastating, affecting both the patient and his or her loved ones
  • We need our friends and family to be open-minded and understanding

There is no cure for MS, but it is not a death sentence (and can make you stronger in many ways): 

  • There is a continued need for research with the hope of one day finding a cure
  • There is no miracle potion that will cure MS
  • MS doesn’t change who a person is, but it can change what a person is able to do
  • Hearing a doctor tell you that you have MS can be incredibly frightening, but over time, people with MS are able to educate themselves about their condition and face it head-on
  • MS isn’t always debilitating
  • It is not contagious
  • MS is associated with many challenges, but these challenges can ultimately make you stronger

What do you wish people knew about MS? What do you think are the most common misconceptions about MS?


Latest Issue of The Motivator Now Available for the MS Community

savas2The Motivator is MSAA’s award-winning magazine provided to the MS community and to our generous supporters. Distributed twice per year, this publication addresses the physical, emotional, and social issues that arise with MS, and provides information and support to many individuals affected by this disorder.

We’re pleased to announce that the Winter/Spring 2014 issue of The Motivator is now available to read!


Cover Story:
The Emotional and Psychological Symptoms of MS
… The symptoms of depression, anxiety, and pseudobulbar affect (PBA) are described, along with effective treatment strategies. Important information is also given on how these symptoms affect roles and relationships, sexual function, and self-image.
Read the full story

Feature Story:
…Competitive “biosimilar” drugs may soon be considered for approval. Read about how these “highly similar” drugs may affect procedure, treatment, and cost.
Read the full story


Program Notes:
…Details on MSAA’s new Swim for MS online Aquatic Center are highlighted. This national program initiative supports the awareness, understanding, and availability of swimming and aquatic exercise as a positive wellness opportunity for the MS community.
Read the full story

Read the latest issue of The Motivator



A Special Report on Oral Treatments for MS

Health Union recently released results from the 2014 MS in America Survey, which included responses from more than 5,000 multiple sclerosis patients. The survey addressed a variety of topics that impact individuals living with MS, including diagnosis, symptoms, treatment, relationships, career, and quality of life.

A special section of this survey focused on the use of oral MS therapies. Historically, prescription treatment of MS has been dominated by injectable and infusion therapies. With the recent introduction of oral prescription drugs for the most common type of MS called relapsing remitting MS (RRMS), this paradigm is shifting towards orals, with nearly a third of RRMS patients reporting using an oral prescription.

Needle fatigue, tolerability, convenience and efficacy are the most cited reasons for people choosing oral therapies and respondents report being more satisfied with oral therapies than injectables. Of those currently taking an injectable, nearly half have considered switching to an oral, signaling a continued shift away from injectable therapies.


Overall, patients taking oral MS medications found their medications to be equally effective as injectable treatments. However, 58% of respondents felt that oral medications offered better tolerability.


More results from the 2014 MS in America survey can be found on MultipleSclerosis.Net, including the special report on oral MS treatments.

The MS in America Study was conducted online in early 2014. The goal of the study was to establish an understanding of the current state of people affected by MS. The survey included a total of 156 questions on a broad range of topics.

A total of 6,202 people started the survey. 5,710 met eligibility requirements, and 5,004 people completed the survey. To qualify for the survey, participants had to be MS patients over 18 years old and a US resident or US citizen living abroad. The study was solely developed and funded by Health Union, LLC which does not manufacture, sell nor market any product to diagnose, prevent or treat MS or any other disease.