Seeking Experts and Finding Treatment Answers

This blog post is sponsored by Med-IQ- working together to improve the lives of those living with MS

Treating multiple sclerosis (MS) takes more than a drug.  It’s a lifestyle change combined with teamwork.  These changes have made a huge difference in my life and I feel this information can help you live better. By combining self-care with guidance from medical professionals, patients are finding better ways to manage their MS.  

Health care professionals provide medical advice and recommendations.  Self-care empowers patients by helping them take charge of their lifestyle.  

Having access to current research, scientific findings, and professional expertise can make a difference in how health care professionals treat their patients. 

This is one reason why I chose to work with Med-IQ, an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, other health care professionals.
The second reason is because Med-IQis helping share my stories with those that can help others - the health care professionals who treat patients on a regular basis.   

The more our medical team understands and knows what we are living with, the better they can serve and help those with MS live a better life.  
They know the medical tools.  We know our symptoms.  Together we can make a difference!

Symptoms Versus Disease


There is strong evidence that treating MS as early as possible has its benefits.   

Whether you are newly diagnosed or living with MS for years, the question about which treatment is best never ends.  

MS is a complicated illness.  There is the demyelination of the nerves and the symptoms that result from this nerve damage.  There is no cure.  

But MS is more than the disease.  The resulting symptoms can cause havoc on someone’s quality of life.  

Because of the loss of myelin, nerves short circuit and do not communicate as they should, resulting in a broad range of symptoms such as extreme fatigue, pain, spasms, numbness, tingling, cognitive issues, bladder problems, vision problems, and more.    

Doctors may prescribe a variety of drugs to prevent future occurrence of the symptoms and help you live better. But, many of these drugs have side effects or are not tolerated by some patients.  

DMT Basics 


Today there are 15 disease-modifying therapies (DMTs) for MS patients, varying from less aggressive forms to bulldogs that have hefty side effects.  They are FDA-approved, clinically tested treatments to help slow down the progression of the disease and its associated disabilities. But which one is right for you? 

DMTs are designed to reduce inflammation by using a variety of factors that affect the immune system.  The hope is for fewer relapses, less severe relapses, slower progression, and reduced disabilities.  DMTs are notdesigned for symptom management.   

DMTs are divided into categories based upon route of administration: injectables, oral drugs, those taken intravenously with an IV.  The drugs range from less aggressive drugs with fewer side effects to aggressive medicine with more risks.  

The 15 approved DMTs as listed on the National MS Society’s website: 

Injectable
Oral
Intravenous

You can find a list of these medications on the National MS Society’s website, as well as risk and safety information for each (DMTs). 


DMT Risks and Side Effects 


It is known that treating MS early and aggressively has its benefits.  But how aggressively should it be treated?  

With the increased amount of aggressive MS treatments come greater risks and side effects.  Liver damage, hair loss, and even death may occur.  

In order to best minimize risk while attacking MS, it’s necessary to be in open communication with your doctor and nurses about the medicine, your lifestyle, your habits, and the risks you are willing to take.  There are options.  

Three Habits of a Proactive MS Patient

These three habits can support you in managing your MS.

1.     Create open communication with yourself, your family/friends, and your doctor and care team.  
2.     Attend doctor appointments and use MRIs & other measurement tools to track disease activity.
3.     Practice self-care: Love yourself with healthy actions.

Open Communication


It’s crucial that you are able to talk comfortably with your health care providers to find the best combination of medicine and to help minimize risks.   
  
Do you drink?  Smoke? Take your medicine on a regular basis? 

Scary as it may seem, being honest with your doctor and care team will provide the best outcomes.  This will only come if you are honest with yourself.  

While advances in research are getting closer to finding targeted drugs for individuals, at this time it becomes a trial and error game.  And this can be difficult.  

Be patient and kind to yourself during this time.  Be open with yourself and your doctors.  Ask questions, be smart.  Together you will find the right solution!  

Self-Care 


Every person is different and reacts differently to medicine, but there are actions one can take to minimize MS symptoms naturally.  

This is time to bring in self-care.  While the DMT is fighting your disease, bring in your own actions to fight thebattle.  

Take control of what you can: eat healthy, stop smoking, exercise, and practice life skills to manage stress.  

MS patients have a harder time with their disease when other comorbidities occur, such as diabetes, obesity, and high blood pressure.  The better we can manage our own health, the better chance we have for controlling MS.  

Finding Quality of Life

MS is a manageable disease.  Through teamwork, honesty, and action, patients’ lives are fulfilled.  Quality of life is increased.  

Consult with your doctor.  Talk with family and friends.  And check out reliable sources of information like those listed below.  

And above all, know that you have this - that you are going to take action and do the best you can. 

That together, we are going to say, #takeTHATms!  


Resources

a.       US National Library of Medicine 
b.       Mayo Clinic 
c.       National Institute of Neurological Disorders and Stroke 
d.       National MS Society 


Take the Survey

Help us learn more about your experience with MS and working with your care team experience by taking this survey.  The survey, which includes more education on this topic, will take less than 15 minutes to complete. Survey responses are anonymous and will be shared only in aggregate.  Your responses to these survey questions will provide Med-IQ with important information about your experiences with MS treatment and your care team, which will help us develop future educational initiatives for doctors to improve MS care.

The survey, which includes further education on the topic, will take less than 15 minutes and upon completion, and you will be entered into a drawing to win 1 of 3 $100 VISA gift cards, with a total prize value of $300. 

 The emails and names will only be used for awarding the winner.  They will not be kept!  



The information provided through this activity is for continuing education purposes only and is not meant to substitute for the independent medical judgment of a physician relative to diagnostic and treatment options of a specific patient’s medical condition.

Join the fun and #takeTHATms!


#multiplesclerosis #livebetter #spon #takeTHATms!



I was compensated by Med-IQ through commercial support from Genentech to write about MS.  All opinions are my own.

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MS and Medicare - a guest blog post

Does Medicare Cover Multiple Sclerosis?

Multiple sclerosis, or MS, is a widespread and oftentimes disabling neurological disease that affects about 400,000 people in the U.S. Each week, 200 people are diagnosed with MS, most of them women. Although it can occur at any age, it’s most often diagnosed in people between the ages of 20 and 40. 

It’s almost impossible to predict how multiple sclerosis will affect a particular person. About 20% of MS patients have what doctors call a “benign” course of the disease. These individuals have few, less severe symptoms, and the disease progresses slowly. About 15% have the most aggressive form of MS, with steadily progressive, severe symptoms and few or no periods of remission. 



As you’d imagine, treatment for multiple sclerosis is very costly. Of all chronic diseases and conditions, only congestive heart failure costs more to treat on a yearly basis. On average, medical treatment for a person with MS costs between $8,500 and $55,000 per year. 

If you or someone you care for has multiple sclerosis, and you rely on Medicare for your health insurance, here’s what you need to know about your coverage. 
How is multiple sclerosis diagnosed?
Unfortunately, there is no specific “multiple sclerosis test.” If your doctor suspects MS after reviewing your symptoms and doing a physical exam, she will likely order one or more of the following tests to confirm the diagnosis:

● Blood tests. Although your doctor can’t diagnose MS from a blood test, she can rule out other conditions that might be causing your symptoms. 
● Spinal tap. MS causes known abnormalities in spinal fluid that can be identified by a pathologist to confirm the disease. 
● MRI of the brain or spinal cord. Multiple sclerosis can be diagnosed by the presence of sclerosis, or lesions, on these structures. 
What Medicare covers:
Medicare covers all medically necessary doctor visits and tests your doctor orders to diagnose multiple sclerosis. Part A provides inpatient hospital benefits and Part A covers outpatient medical. Most of the tests are done on an outpatient basis, which means they are covered by Part B. 

Medicare Part B pays for 80% of covered services after you first pay an annual Part B deductible. This deductible is $183 in 2018. 

You also pay the other 20% of the allowable charges if you have Original Medicare. There is no annual cap on how much you might spend for your share of Part B expenses.  So, many individuals with Original Medicare also have a Medigap plan. 

Most Medigap plans cover the 20% coinsurance under Part B that you would normally be responsible for. If Medicare approves a claim and pays its 80% share, your Medigap plan will cover its share, as well. This leaves you with little-to-no out-of-pocket for many services, depending on which Medigap plan you choose.

You can choose from 10 standardized plans in most states, and many of them also cover things like deductible and copays for hospital, outpatient and skilled nursing facilities.
You can find a list of plans and what each plan covers here.
How is Multiple Sclerosis Treated?
There is no cure for MS; treatment focuses on managing the symptoms and preventing disease progression. 

There are three types of MS:

● Relapsing-remitting MS (about 85% of all diagnoses). This type has well-defined periods of disease activity and worsening symptoms followed by periods of remission. 
● About 50% of people with relapsing-remitting MS go on to develop a more aggressive form of the disease known as secondary-progressive MS within 10 years of diagnosis. 
● Primary-progressive MS (about 15% of all cases). This type of multiple sclerosis steadily progresses without any periods of remission. 

Treatment generally focuses on three areas: managing an active MS attack or flare-up, slowing the progression of the disease, and managing the signs and symptoms. 
Managing flare-ups
During an active MS flare-up, you may be given corticosteroids, either by mouth or IV, to reduce nerve inflammation. 

If your symptoms are particularly severe, or aren’t responding to steroids, you may have plasma exchange, or plasmapheresis. This is an outpatient procedure that exchanges the liquid part of your blood, known as plasma, for plasma from a donor. You may also get a plasma substitute during plasma exchange. 

Plasma exchange works by removing the proteins in your own plasma that cause MS attacks and replacing it with “clean” plasma from a donor or plasma substitute. 
Slowing disease progression
There are several prescription drugs used to slow the progression of the disease. If you have primary-progressive MS, the only FDA-approved medication is Ocrevus. This drug is usually given by IV infusion in an outpatient infusion center. 

For relapsing-remitting types, there are several prescription drugs including beta interferons, Copaxone, Lemtrada, Gilenya, Aubagio, and Tysabri, among others. Some of these medications are given by IV infusion, some are injected under the skin or into the muscle, and some are taken by mouth. 

Managing your symptoms
Treatment to manage the symptoms of MS may include physical therapy to strengthen muscles and improve mobility, and prescription medications to relieve pain and reduce muscle spasms. 
What Medicare covers:
Multiple sclerosis medications given by injection or IV infusion in a doctor’s office or outpatient setting may be covered under Part B at 80%.

Medically necessary outpatient treatments such as plasma exchange are covered under Part B, too. 

Part B also provides physical therapy that your doctor orders to help manage your MS symptoms. In prior years, there was an annual limit, or “therapy cap,” on the amount Medicare would pay towards physical and occupational therapy. These no longer apply in 2018, although Medicare may review your health records once your therapy bills reach $3,000 to make sure your treatment is medically necessary and qualifies for coverage. 

Of course, if you are hospitalized for multiple sclerosis treatment, your care is covered under Part A at 100% for the first 60 days after you’ve met your Part A deductible. This deductible in 2018 is $1340.

Some individuals opt to get their Medicare coverage from a private insurance company instead of Original Medicare. These are called Medicare Advantage plans.  If you have Medicare Advantage, your plan covers the same covered services asOriginal Medicare. Instead of 20% coinsurance amounts, however, you may pay a flat copayment amount for your care.Each plan varies and you should review your plan’s Summary of Benefits to see what your cost-sharing responsibility is for various services.

Oral medications you take at home are almost never covered under Part B. However, Medicare Part D is a voluntary prescription drug program that you can enroll in to help cover the costs of your retail outpatient medications.

If you have Medicare Part D coverage for prescription drugs, either as a stand-alone plan or as part of your Medicare Advantage plan, your multiple sclerosis medications are generally covered. Depending on your plan, you may have an annual deductible and/or copayment amounts when you fill a prescription. All plans have catastrophic coverage which helps to limit the total dollar amount that you can spend in any given year.
Does Medicare cover medical equipment I need for multiple sclerosis?
Some people experience mobility problems as their disease progresses. Your doctor may recommend a cane, walker, wheelchair, or other device to help you get around. You may also need equipment in the home such as a hospital bed, bedside commode, or other assistive devices. 

Part B covers durable medical equipment (DME) at 80% of the allowable charges after you meet your Part B deductible. You may need to get your equipment from suppliers specially contracted with Medicare in order for your benefits to apply. It’s easy to find these providers on Medicare’s website using their Find a Supplier tool.

Danielle K. Roberts is the co-founder of Boomer Benefits, where she and her team help Baby Boomers navigate Medicare.


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Meet Aby and Get Tips About Living With MS and Overall Well-Being.


Meet Aby and Get Tips About Living With MS and Overall Well-Being.  
by Caroline Craven

When chronic illness hits, it is not only the body that is hurts.  Everything can be affected, leaving one to feel out of balance in life. 

If you are not nourishing your whole self – including the body, mind and soul, it’s likely that your wellness may suffer. 

It can certainly be difficult to find balance while working, taking care of others and being present for friends and family. 

Divide and Conquer 

Let’s look at how we can dissect these elements into more digestible pieces by using Aby – a new app created by Biogen for everyone living with multiple sclerosis (MS) and the people who support them.

This app is a really useful tool for anyone impacted by MS – from newly diagnosed patients to those who have had MS for many years, as well as their caregivers and health care providers. 
  
Before getting started, consider your current state of affairs.

Visualize how sensitive you are in your condition.  Are you feeling in balance with everything going on in your life?  

While we may feel as strong as an oak tree on some days, more often we may be delicate dandelions figuring out how to not blow away in the wind.

Then look closely at your body, mind and soul.  How are you feeling physically?  What are your emotions like today? How do they differ from the week or month prior? 

Now take it one step further, and think about your vulnerability at this moment.  Does one little thing happen and you are wiped out for the day?  If so, then it’s time to slow down, breathe deep and nourish yourself.   

To help capture these sentiments, after creating an account on Aby, you can use the journal feature to record your sleep patterns, activity levels and emotions from day to day. I love that it’s all in one!  

I take advantage of the Aby notes section in the journal, to keep track of the myriad of feelings that I feel throughout the day.  Later, when my sleep, activities and emotions have been recorded, I can look back and see trends, using this information to manage how I use my energy and better understand my body.  

6 Tips to Find Balance in Life

With this information, you can identify ways to find balance in life while nourishing yourself.

To find balance, here are some techniques I would recommend: 

1.         Seek quiet:  Whether it’s a “do not disturb sign” on your door or a walk to a peaceful spot outside, find a place where you feel safe and where you can be at peace. This may mean a gentle stroll or roll without people around, or possibly a few minutes in a quiet room, or under a tree in a garden.  Just sit, be quiet and become increasingly aware of your body and surroundings.
  
2.         Break up the routine:  Do not sit in one place too long, especially at a desk in an office or while working.  Stand up, stretch and walk around.  When life becomes stagnant, it can become a vessel for ill will and bad energy. Think of pond scum.  But, if you take charge and make changes, you can encourage your life to flow with clarity and beauty.  

Tip:  EXPLORE the exercise program in Aby.  “Warm-up” is only 48 seconds long.  Short enough for everyone to fit into their schedules.  


3.  Listen to music:  Music may soothe the beast within, so give it a try!  Many folks find it may help with focus and motivation. You can use it to get moving in the morning or for an afternoon jolt.  Try different genres and see which ones inspire what’s inside of you.  Get up and dance if it so moves you!   

What’s your favorite dance tune?  Right now, I’m stuck on the soundtrack to Peter Rabbit, the film of 2018.  So fun!  

TIP:  In Aby, record your activities in the journal.  And then, add your mood, your sleep and your MS symptoms.  The first day may not seem that important, but trust me, a week or so into it and this information will be handy to have.  It has become a great way for me to spot trends in my MS symptoms.  

4.  Stay hydrated:  Often considered the essence of life, surround yourself with the cooling, cleansing presence of fresh water.  Drink it filtered, all day long.  While bathing and cleansing, be appreciative of the water flowing freely from the faucet.

Take this time to acknowledge the gratitude to those you love and the life you appreciate. Remind yourself of something beautiful in your life.  Carry the sense of water throughout your home and garden by adding water elements to your surroundings, such as a fountain.  Download an app that sounds like the ocean or a river and carry the water element with you throughout your day.


5.  Elevate your diet: Perceive all healthy food and drink as nourishment for your mind, body and soul.  What are you feeding yourself?  Is it working?  One way to feel better about yourself is to add more plant-based foods to your diet. The variety of colors, vitamins, textures and tastes are endless.  Use them raw or find recipes to cook.    

Want some inspiration for a meal?  Make themes for your dishes.  One suggestion is to have a different color in every pot.  Another is to have a meal in honor of a great piece of art in your house. Match the colors and play with the plating and table displays.  Be creative and enjoy your inner “Martha Stewart.”  

Tip:  EXPLORE the diet and nutrition feature in Aby to learn about healthy recipe options!  Check out “Tips for Healthier Eating.”  

6.  Smile: Smiling is contagious in a good way, and it’s hard to be in a bad mood when you have a smile on your face! It also physically works the face muscles, and is just a darn good thing to do. Pass it on!

Look at the Bigger Picture

We define ourselves by what we do, so let’s think again about the bigger picture.  Why are we on this planet?  One might say we are here to do good unto others, to enjoy the beauty surrounding us and to shower the world with love.  While people have other ideas about why we exist, this image is perfect enough to place us in a positive mood.  

Most importantly, enjoy what you are doing!  Life can throw us some real curve balls, but we can duck, swing and catch them when we are at our strongest.  I hope that the Aby app may help provide you with additional inspiration.   

How Do You Aby?  

There is much I find helpful by using Aby.  By easily tracking my life with MS, I’m taking the first step to help take control of my actions. 

After weeks of recording my information, I have found trends in my symptoms.  I can now share this information with my health care professionals to help keep on top of this illness.   

Dive in and give it a try. You can download the app for free by clicking the icons below, or by searching “Aby” in your app store. 

It is my personal goal in life to help everyone with MS.     

Together, we’ve got this!   

*Please note that I am being compensated by Biogen to share my experience with the Aby app.* 

#MS #multiplesclerosis #aby #livingwithMS #spon 


            
               
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Day 10: ReNew YOU Journal

Day 10 of my ReNew YOU Challenge

Have you checked out my ReNew YOU challenge?  Interesting stuff here to help you live a better life.

Click here for ReNew YOU
Click here for my daily journal 2019.



 An excerpt from today - Jan 10

WOW.  I cant believe I am here.  And would not be here if it weren’t for all of your well wishes and support.

I walked 4 miles today!   Wahooo!!

My work is paying off but still having some issues.

I was having a hard time committing to walking/exercise so my friend joins me - it makes me accountable and I need that!

But because I’m persevering, I am on my way to achieving my goal of improving my MS health by taking self-care steps of wellness.

1.  Walking:  Heading out for my third walk this week:  builds strength and heart health.


2.  Stop and smell the roses:  builds appreciation and gratitude.




3. Do not procrastinate - even the dullest of chores to be done now.  And it’s helping a lot.  They need to be done so just do it!

4.  Eating healthy.  Wish I got a photo of the Sushi Burrito from Bristol Farms.  Delicious!  And Uber healthy.  I split it with my friend.

5.  Time with friends.  Today with my friend on a walk.  Several friends on the phone.

6. Compartmentalize my day for work.  I divided up the day and two hours a day, first thing are spent on GWMS.  then, writing and other gigs come into the picture.  When there is ton to do, it’s important to divide and conquer.

7.  Smile.  Smile and pass it on.  The cheapest form of joy we can spread.

8.  Having moments of doubt?  Repeat your affirmation.   Today, my affirmation is this:

“Because I am walking, working hard and taking care of myself, I am on my way to reaching my goal  of improved health and I am feeling strong, capable and empowered.”

And remember... #takeTHATms!

CLICK HERE TO read the journey...

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Find a new you with 30-Day ReNew YOU Self-Care Challenge

Jan 1, 2019 - time to make a change.  Bad habits crept in and I paid the price.  I’m doing my own 30-day ReNew YOU challenge - Want to join me?

 Click here to follow my daily journal.


I had pretty bad pain during the night and not sure why.  My diet was low sodium and pretty healthy.  That can often cause the pain.  But I was mellow and took care of myself the last few days.  Why the pain?  

The holidays caught up with me both in stress and physical damage. In addition I’ve been feeling a bit down - oh heck, I hit a low.  

But the good news is that all of these are irreversible with specific self care actions.  And it’s time to make a change! 

I’m taking my own thirty-day “ReNew YOU Self-Care Challenge.”   

Want to join me?   CLICK HERE

This easy to follow program will get us starting 2019 in a positive attitude and on our way to reaching our goals.  Let’s do this! 

 The Challenge consists of answering questions and formulating an affirmation to carry with you.  There are several sessions and these will be posted here.  

SESSION 1:  Getting Started - Creating Goals and Vision 

SESSION 2:  Action Steps - building a tool box 

SESSION 3:  Building Affirmation - Coming Soon


I do these challenges often and today seems a perfect day to start another.  

Here’s how we’re get started: 

1.  State a goal or two that we want to accomplish. 
2.  Define action steps and tools to get us there.  
3.  Create the inspiration to help us along the way.

Considering my challenges today of pain, stress and feeling low, my goal to kick off the year is to Upgrade my MS health.  I’ve let things slip and by getting back on track my symptoms and stress will be alleviated.  

During the holidays and if I’m not paying attention, my diet creeps higher with sodium, over processed flour and to much refined sugar. This year has been no different.  I’ve also been spending much time on my rear, and not out moving like I could be.  This year has also been a wonderful year of expenses.  Wonderful because they all represent memories and fun times.  But alas, time to tighten that money belt down and gain some control.  

I acknowledge these weaknesses, own them and know they  must change.  Time to rein in the unhealthy desires and replace them with positive, healthy habits.  

Join me in the process.  Follow along and answer these questions and we can discuss/chat online or on the phone.

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What would you do with extra time each day?

“Thank you Avior Nutritionals for helping those living with MS find a higher level of wellness and for sponsoring this post.”  


An Open Letter to My Friends Living with MS

Caroline Craven - the Girl with MS


To my friends living with MS, 

What would you do with more time in the day?  Even 5 minutes? 

That’s what I’m asking myself now, almost every day.  

I used to rest and take naps in the afternoon.   I never scheduled anything after lunch.  Who knows how I would feel?  

But things are different now. I continue to take better care of myself.  Yoga, gentle living, and healthy eating are just a few things I focus on.  Going to the doctors and taking my vitamins are also kept up on a regular basis.  

And then, last spring, I added Myetin into the mix.  It has been a huge bonus in my life.  The spasms and pain have been greatly reduced.  But most impressive has been this new found energy.  

Myetin is a combination of high-dose biotin and NAD+ made by Avior Nutritionals.

I know that this post is sponsored by Avior Nutritionals, but I am writing from the heart to say that sure do wish I had started this supplement much earlier.   On a daily basis I am amazed at the level of my afternoon energy on any given day.  

Whale Watching Pacific Ocean
Everyone with MS is different. And I am not a medical professional. But, there is scientific research behind high dose biotin and its potential benefits for those living with MS. 

And dang, if they don’t taste great.   I’m grateful that I can’t overdose on them.  As I’ve said before, these are my Scooby snacks.  After my pills, and only after do I get to slowly dissolve my Myetin.  

Please consult your health care provider.  And as always, if you have any question at all, please feel free contact me online at GirlwithMS.com. 


I still have down days, where a rest is needed after lunch.  But these occurrences are scant compared to the past.  Lately my afternoons are spent with friends, puttering in the garden, cooking for the family or working on MS advocacy.  Wow.  
Enjoying Harvest Festival! 
It’s still a rare occasion that I plan anything too important in the afternoon.  But if it’s necessary I seem to be able to pull through.  

Never imagined this energy would return.  

Thank you Avior Nutritionals for all you do to say #takeTHATms!  

Best, 



Caroline Craven
@thegirlwithMS


This blog post created in partnership with Avior Nutritionals. 
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Guest Blog Post: Dr. Terry Wahls Recruiting for Diet Study


TWO MS DIET STUDIES are RECRUITING

MS Diet Study Research Opportunity Worldwide 
Many people with multiple sclerosis (MS) are very interested in dietary approaches to managing MS-related symptoms. 

Unfortunately, there is not a lot of research on which diet people should follow. Research has mostly focused on which supplements to take. Studying food choices and diet is much more complicated and equally as important. 

Right now there are two studies planned to examine if there specific diets that help reduce MS-related symptoms.

To find out the impact of specific diets, we need participants. Please consider enrolling in these two studies. 

  Dr. Terry Wahls  

1st STUDY:  Dietary Approaches to Treating MS-Related Fatigue 
Dr. Terry Wahls does clinical research at the University of Iowa, studying diet in the setting of multiple sclerosis. We are conducting an interventional study to understand how diet can affect fatigue. 

 In our study we will be comparing the effectiveness of the low–saturated fat diet (Swank) and the modified Paleo (Wahls Elimination) for reducing the severity of MS-related fatigue symptoms and quality of life.   

The study lasts 36 weeks. We conduct baseline assessments and ask participants to continue eating their usual diet for 12 weeks, during which time there are repeat assessments. Then patients are randomized to one of the two study diets, trained on their assigned diet, and receive coaching calls to help them successfully adopt and sustain the study diet. There are repeat assessments 12 and 24 weeks later. 

We are currently recruiting participants and will continue recruiting through early 2019. Participants must have a diagnosis of relapsing-remitting MS, fatigue, and live within 500 miles of Iowa City, Iowa. This includes the states of Iowa, Illinois, Indiana, Missouri and Wisconsin, and parts of Arkansas, Kansas, Kentucky, Michigan, Minnesota, Nebraska, North Dakota, Ohio, Oklahoma, and Tennessee. 

Individuals interested in being considered for enrollment in this study may complete screening questionnaires and use code JMJPYEJHP. 

For questions, please email MSDietStudy@healthcare.uiowa.edu or call 319-384-5002.



 2nd Study:  Complementary and Alternative Medicine in Multiple Sclerosis  
The second study is an observational study being conducted at Bastyr University for people with MS, optic neuritis, or clinically isolated syndrome. The survey asks participants about their diet, complementary and alternative medicine use, current symptoms, and quality of life. 

Participants are asked to complete surveys twice a year. Because it follows people over time, this study can also help answer questions about which diet is associated with better quality of life and fewer MS-related symptoms. 

Also, because this is a survey-only study, people can participate from all over the globe. You can learn more about this study and complete the surveys using this link.

Please consider participating in these important studies and encourage others to consider participating as well. Changing clinical practice so dietary advice is part of the care for people with MS requires research that asks the question, “Can diet reduce MS disease severity?”  

We have two studies asking that question. MS researchers from around the globe including myself and the MS community are anxiously awaiting the results from these studies. I hope you’ll consider participating. 

We’d love to include you! 
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