FDA approves generic for Tecfidera - what this could mean to you.

When a branded drug, such as Tecfidera, loses or outgrows its patent, then a generic may become available.  And this may be an expensive change depending on the state you live in.  

On August 17, 2020, the FDA approved a generic drug of dimethyl fumarate by maker, Mylan (now part of Viatris), that is biosimilar to Biogin’s branded Tecfidera. This is VERY important to know in certain states such as California because your insurance may no longer cover brand name Tecfidera starting Jan 2021.  Or the pharmaceutical company may no longer be able to provide financial assistance.  Your doctor may need to change your script before the end of the year.

It’s very important that you talk with your doctor and your insurance company.  

Not all states prohibit/limit copay/financial assistance.  The generic dimethyl fumarate is made by Mylan with unclear copay assistance.  If you want brand-name Tecfidera, ask your doc to write Dispense as Written DAW on script. Pharmacy wouldn’t be able to substitute with generic. Insurance company may or may not cover brand-name med.

Each state is different.  Taken from RollCall - News from Congress: 

• “In Arizona, a new law bans insurers from excluding the discounts only when a brand-name drug lacks a generic alternative, or if the patient obtains permission from his or her insurer to use the branded version.
• A 2017 California law prohibits manufacturers from offering coupons at all if a generic is available, but allows copay assistance from independently controlled charities.
• A 2012 Massachusetts law prohibits drug manufacturers from offering coupons or other assistance when a generic is available. The generic provision is scheduled to sunset soon, so coupons would be outlawed entirely.
• A bill in New Hampshire follows California’s law, and also grants an exemption to patients who obtained their plan’s permission for the branded drug.
• A New Jersey bill would outlaw discounts from drug manufacturers but doesn’t mention charities.“

Each state in this country is different but here in California, there is a law (AB265) that prohibits pharmaceutical companies from providing financial assistance for their drugs to their patients once a generic is approved. 

I’m not here to form an opinion rather than to inform you that if you live in a state like California and your insurance can not cover Tecfidera or you rely on financial assistance from Biogen, then you could end up with a giant copay surprise.  Check with your insurance, state and your neurologist. My neurologist was the one who told me about this and I’m not on it. But this is so important to know!  

He mentioned how  important It is to talk with these people and make necessary changes prior to the beginning of the year, 2021, as that’s when the insurance coverage will change for this drug.  

Talk with your HCP. Talk with your Insurance Company.  Call Biogen Support Services ( 1-800-456-2255).  

Biogen is available to help with questions ( 1-800-456-2255)

“California prohibits companies from offering copay assistance to patients three months after a generic becomes nationally available. For this reason, starting in mid-November the Biogen Copay Assistance Program will unfortunately no longer be available for TECFIDERA patients who reside in California or obtain their medication from a California pharmacy.

 

All impacted patients are being contacted to alert them of this change and, if requested by the patient, Biogen Support Services will help them investigate benefit options. Biogen remains committed to providing copay assistance for our other MS therapies, including another fumarate. We recommend patients speak to their healthcare provider to determine what is most appropriate for their situation, or contact Biogen Support Services at 1-800-456-2255.“

Being Thankful During Covid

 Unprecedented times, no doubt.  

As I review my photos and things that I have done since Covid started, I’m feeling better.  A little happier!  

First of all, my friends, supporters and family have been amazing during these times.  There always seems like someone is just a phone call away, especially when feeling a bit down.  

Time to look for things that make me happy. I find myself enjoying paint parties.  A great way to build hand-eye coordination, get messy, feel like a kid and have fun.  I use the “It’s Just Paint” by Sarah Van Loan.  Click here to join one of her many parties planned for the next couple of months!  And TRUST me - she  makes it so easy.  I have never really painted before. These are my firsts:

Cooking, gardening and watching wildlife in my yard were some major highlights these last nine months. The vegetables did great this year. Homemade pickles, lots of sauces and veggies and some beautiful flowers.

This little buck would come over from across the street (the mountains) and join me while I worked and blogged. He’s my little MS activist.  My outdoor office desk is about ten feet away from him.  It was a nice distraction from the nuisances of MS.  

This little lady was across the street and next door.  She came down to my patio with her two cubs after I left to run some errands. They had been taking a nap in a tree next door.  

In the cooler weather I was able to get some good walks in, 3-miles at times! Most of this came from all the encouragement I received from all my MS friends and supporters.   I did get tested for Covid but came up negative. No antibodies either so whatever cold I had before was probably something else.  

One place I found a lot of support was via the BELONG.LIFE app, BelongMS. (Click Here to download app). The communities provided, including my support group, Girl with MS, have allowed me to survive during these times. I found myself in a dark hole more than a few times.  I reached out and found ways to self-care.  I also called my doctor and had my medicine adjusted for anxiety. 

I even took out the art pencils and started doodling a bit along with some journaling.  

And on the cooler days my legs were able to carry me to the river for some fly fishing. Always one of my favorites.  

Because of my walking and yoga... I have been able to keep up with a relatively healthy summer and fall.  For that I am very grateful and thankful.  

We’ve got this!  #takeTHATms! 

I know, lots of photos.  But they make me happy and remind me of the good times of Covid and not just the stress.  Thank you for being there for me! 

What's all the buzz about Kesimpta® - the newest FDA approved Drug for Relapsing forms of MS?

OK guys, KUDOS to all those doing incredible research and clinical trials for us living with MS!

Especially during this time of Covid-19, it's nice to hear of the continuous progress being made.  As someone living with MS for twenty years now, I am always interested in learning about new therapies and how research and approaches have changed over the years.   

Today we have ofatumumab, brand name Kesimpta®, the newest disease modifying therapy approved by the FDA for relapsing forms of MS. Kesimpta® is produced by Novartis.  When I heard this, I wanted to learn more!

I’ve been compensated by Novartis in the past but the opinions expressed here are my own

(These thoughts are my own - I am not being compensated for this post.)

Kesimpta® is a disease modifying therapy that targets B-cells in the body to help the immune system manage itself better and help with inflammation.  In doing so the rate of relapses and disease progression can be reduced helping people with MS live a fuller life.  Or at least this is what the research is showing.  I recently wrote about Kesimpta® for Healthline.com and contains a lot more information.   

Just released, Kesimpta® is already being prescribed and used. This Girl with MS is darn excited to hear how folks are liking it!  You can check out their information and patient support at kesimpta.com.  

I sat down the other day and got to interview two interesting folks. One a doctor and one living with MS.  

Kerry, 38: Kerry was diagnosed with relapsing remitting multiple sclerosis (RRMS) in 2012 after experiencing a loss of sensation in half of her face for nearly two weeks. Today, she leads a busy life day-to-day as an advertising executive and mother of two young boys. Kerry’s husband is a key point of support at home when MS symptoms may tire her out. Kerry has never taken and is not currently taking Kesimpta. Of note, Kerry currently works for an advertising agency that services Novartis, but is not being paid for this opportunity.

 

Dr. Robert Shin, Neurologist: Dr. Shin is a Professor of Neurology at Georgetown University in Washington, D.C. and the Director of the Georgetown Multiple Sclerosis and Neuroimmunology Center. Dr. Shin specializes in multiple sclerosis and neuro-ophthalmology. Dr. Shin is a paid spokesperson for Novartis.

I recently wrote about Kesimpta® for Healthline.com.  Click here for full article. Some excerpts below: 

“This data is very promising and very positive,” Bruce Bebo, PhD, the executive vice president of research at the National Multiple Sclerosis Society, told Healthline last week. “We are excited about this option.”

More than 900 people received ofatumumab in the multi-center clinical trial this summer.

In study results published earlier this month, the immune-modulating drug was shown to quiet inflammatory disease activity. 

Researchers said a subcutaneous injection of ofatumumab produced a significant reduction in new inflammation as well as fewer clinical relapses and progression events. 

In the second year of treatment, nearly 9 out of 10 study participants on ofatumumab showed no sign of disease activity.

The study covered two double-blind, double-dummy phase 3 trials, ASCLEPIOS I and ASCLEPIOS II. Both were funded by Novartis.

The trials were conducted at 385 sites in 37 countries, comparing ofatumumab with teriflunomide, currently marketed in the United States as Aubagio, by Sanofi Genzyme.

Ofatumumab is similar in action to ocrelizumab, marketed in the United States as Ocrevus by Genentech.

These two drugs were not compared against each other, but the mechanics are the same as they target B cells in an effort to manage the immune system. 

“The clinical data is similar between the two, but the route of administration is different,” said Bebo.

  I recently wrote about Kesimpta® for Healthline.com. Click here for full article.

You can check out their information and patient support at kesimpta.com.  

(These thoughts are my own - I am not being compensated for this post.)

Just earlier this year we had the FDA approval of Zeposia® (ozanimod), produced by Bristol Myers Squibb.  Click to read my post about it.

Facebook shuts down theGirlwithMS without warning, specific reason or recourse

On 25 May, 2020, our USA Memorial Day, I received notice that my personal facebook account had been shut down and needed to be verified.  After using every tool offered by FB, I was eventually told that I had been verified and would not be verified again. This account was how I access my fb page, Facebook.com/thegirlwithms.  

In shutting me down they also shut down my Instagram account.  No specific reason. No warning.  And no way to contact either facebook or instagram.  

At the height of our COVID quarantine, I found myself completely isolated from all of my friends, my family, the thousands of people living with MS who follow me, and all of my MS support groups.  As a disabled person, I rely heavily on all social media to help me stay sane and healthy.  Maybe that was a mistake. 

With all the crud I see on facebook, why in the heck would they take down Girl with MS?  I have no way to see who contacts me via my contact button.  I can no longer make posts or share important MS studies and tips for thriving with this chronic illness.  I didn’t get sent to jail.  I got sent to death row.  

Thank you Mark Zuckerberg and your algorithms!

Not only did I lose contact with my support group and my MS world, but I lost the ability to continue my MS advocacy via two major platforms, part of which support my finances for living.  Maybe fb has gotten too big.  

I lost half of my GirlwithMS branding that has been ten years in the making.  I’ve lost handles that are no longer available. I’ve lost clients, became in default of contracts, and lost every single memory I have made on facebook and instagram these last 12 years. Every photo is gone. I was wiped off the earth as if in some comic book cleansing.  

Here is my facebook page http://facebook.com/thegirlwithms and if you go there and like it and comment to reopen it, the efforts may help! 

I have had attorneys interested in covering the case the but the cost was too high.  I’m working with an advocacy/lobbying group right now and hope to have some resolve soon.   

Here is my last post. I’m glad I had a back up admin to help, but then her privileges were revoked.  Was there something wrong with the page?  If I did anything wrong than I should be notified and given the chance to correct it.  

Is talking positive and sharing tips and research about MS too much for fb to handle?  Is this disability discrimination?  I have no idea but am waiting for some answers.  

It’s time to end the Facebook/Instagram domination and discrimination against those with disabilities.   

I don’t have an image of my old Instagram account, TheGirlwithMS.  There are others out there but they are not mine.  It has been stripped from IG.  

I’m just a white face in a gray background.  Sounds about right for 2020.  

Anyone living with multiple sclerosis or their loved ones will benefit from this page being reopened.  Anyone who is tired of Facebook and Instagram’s use of algorithms and lack of customer service will benefit.  Everyone who wants justice for the good of the public will benefit.  

Facebook and Instagram closed my accounts without warning or recourse. As an award winning blogger and MS advocate, I spend a lot of time, money and energy with Facebook and Instagram. Both of these platforms provide my services as an MS life coach and advocate.  They also connect me with friends, community and support groups.  

By the way, FB had no problem charging my credit card for ads that were running to promote traffic to my site: GirlwithMS.com, even though I had no access to change the ad or stop running it.  

The stress this has brought on as a medically disabled person trying to make a living and stay healthy is over the top.  I’ve lost income, thousands of social followers, lost traffic to my blog, lost half of my Girl with MS brand identity and have suffered relapses due to the stress.  

Please help my fight this and have our rights restored!   

Here is my facebook page http://facebook.com/thegirlwithms and if you go there and like it and comment to reopen it, the efforts may help! 

Thank you for your support!  

Caroline Craven

Writer | Speaker | MS advocate | Life Coach 

You may find me on Twitter @thegirlwithMS.

Hope in the life of the Covid Pandemic - a New MS treatment, Zeposia, approved by the FDA

These last five months have been stressful on the world, let alone those at risk of contracting Covid-19.  But in light of it all there have been some shining news that should be recognized in our news today. 

The Federal Drug Agency (FDA) has approved another new disease modifying therapy (DMT) for relapsing forms of MS!  

ZEPOSIA® (ozanimod), produced by Bristol Myers Squibb was approved and is available for use specifically in the United States. I was able to sit down with Dr. Jacqueline Nicholas, a neurologist and MS expert from Columbus, Ohio, to discuss this new drug and what it means to those living with MS.  

Dr. Jacqueline A. Nicholas, MD, MPH, System Chief Neuroimmunology and Multiple Sclerosis, OhioHealth Multiple Sclerosis Center is a board-certified clinical neuroimmunologist specializing in multiple sclerosis (MS) and spasticity. 

Dr. Nicholas shares tips and tricks to talking with Doctors and finding the best disease modifying treatment for you:

Over one million people in the U.S. live with multiple sclerosis - or “MS” - an unpredictable and sometimes disabling disease that disrupts the flow of information between the brain and the body. And the prices of DMT’s are reaching new heights.  This one actually comes in less than the others, seems like we need to take a closer look. 

 

With 85% of patients initially diagnosed with relapsing forms of MS, ongoing treatment is critical to addressing this devastating neurological disease. Each person can respond differently to MS medications, which is why having treatment options is so important. 

Recently, ZEPOSIA® (ozanimod), a new oral therapy, was approved by the U.S. Food and Drug Administration to treat adult patients with relapsing forms of multiple sclerosis, including clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease.

What will it cost?

• The 30-day wholesale acquisition cost (WAC) of ZEPOSIA will be $86,000, which is the lowest of other MS medications in its class.

How does this compare to other DMT’s available on the market today?  

• ·    Based on WAC prices as of March 2020, oral DMT costs on an annual basis for approved RMS treatments are as follows:[i]

  o    Mavenclad (variable by weight) $107.5

  o    Gilenya (0.5 mg) $103.9

  o    Tecfidera (240 mg) $99.3

  o    Mayzent (2.0 mg) $92.1

  o    Aubagio (14 mg) $92.0

  o    Vumerity (231 mg) $86.8

   

  “Bristol Myers Squibb is committed to making ZEPOSIA accessible to appropriate patients who need it.”

  
  

  o    Through the ZEPOSIA 360 Support™, Bristol Myers Squibb will provide a range of services to facilitate access to ZEPOSIA for appropriate patients with MS. This includes a co-pay of as little as $0 for eligible appropriate patients, assistance with financial support, reimbursement for some initial out-of-pocket medical costs – and a program that may help eligible patients with commercial insurance to receive free medication while they are waiting for insurance approvals. Terms, conditions, and eligibility criteria apply. More information is available at ZEPOSIA.com.

  o  We encourage any families with questions or challenges accessing our medicines to call BMS Access Support at 1-800-861-0048.

  
  

  There is a lot more information on their website but this is interesting about insurance: 

  
  

  What insurance coverage do you expect?

  • We anticipate that 65% of the patients in the US will be commercially insured patients, while the remaining 35% will be government insured patients.

  ·         We have a co-pay assistance program that will cover 100% of out-of-pocket costs for any and all commercially insured patients, which means that around 65% of patients on ZEPOSIA will have a $0 co-pay.

  
  

  ______

  
  

  It’s important to talk with your doctor and/or MS specialist. Find a treatment that works with you and your goals.  There are many options these days!    

  
  

  Time to say #takeTHATms!

  
  

Living with MS during the Corona Quarantine 2020

So, ever wondered what the twilight zone would be like in our life time?  I think we’ve hit it.  As we venture into this awkward time what priorities are you making to take care of your self?

The corona virus or COVID-19 (when it becomes an illness) has changed our world.  There is much we can learn about the virus and also ways to find a healthy, happy life amongst this chaos.

I mean, do we really need 48 rolls of toilet paper or paper towels?  Do we need to hoard and ration like it’s World War II?  It seems that is what we are facing, along with the demands of face masks and gloves.

Braving the market

And some people don’t even believe its a real threat.  Well, as a high risk person, I do believe it is real and know there are things we can do to improve our chances.

I’m sharing some of my activities and, Some information about COVID-19 via my friend and fellow advocate Cathy Chester, and some survival tips from Dr. Terry Wahls and the Wahls Team.

MY Corona Quarantine ACTIVITIES 

For the last month my days have been filled with projects, both big and small.  Things to get off my list because there is not a lot of work out there right now. People are hurting, investments are at an all time low, and money is being found between seat cushions and laundry piles in order to buy the next set of groceries.

I decided on a couple of projects that might interest you - in a way to stay a little happier and healthier during these stressful times.

My first one was a paint by number (PBN) that I received from Winnie’s Picks.  They based the image off a photograph I took in the Galápagos Islands.

Female cactus finch - Galápagos Islands - Photograph

The PBN was a bit difficult for me as I wanted to just paint and draw and feel the flow.  But, I loved the process, the puzzle of it all.  It also required patience and motivation, two parts of life that can easily slip during times like these. It took me awhile but with the quarantine and rainy days, the painting became a fun part of my day.

WinniesPicks set based on photograph

My version of the painting. 

Then I took out my pencils and art supplies and just started doodling.  One day I’ll start messing with more media but this was a fun start.   The process is healing and anything with hand-eye coordination helps my cognitive issues and more.  I also love the tactile aspect of touching and drawing and getting dirty.

Doodling...  

I also started a sour-dough starter.  Her name is Poppie.  Yep, I named her.  And she has produced a lot of good food for us. Now you’re thinking, hey, no gluten, or white flour, and usually I agree.  But in times of war and rations are low, one becomes thrifty and healthy.  Did you know that sour dough has been fermented and therefore the gluten is easier to digest?  I just learned that but in fact sourdough is really the only kind of bread I like.  I don’t eat a lot of it as it will mess with my MS, but have had fun playing in the kitchen.

Homemade sourdough bagels

In addition to starting my “Victory Garden,” the yard demanded some photography.  Or maybe I did as a mental release.

I was actually under the wether for a few weeks, recovering from a cold. It’s been easy for me to quarantine with my team, Mom and Dad.  They’re in their 80’s so are also considered at risk. We take it very seriously but also have fun. Walking, puzzles, and games, oh my!  Plus a lot of good cooking.  I’m feeling blessed and that’s a good thing these days.

I’ve also been enjoying my Cubii!  Remember that easy to use adaptive treadmill. Well, it’s one handy tool right now.  Cubii has special classes you can take online:

• Carrie'e Cardio
• Cubii Pyramid with weights or water bottles workout
• Cubii functional fitness with Anne
• Get your water bottle or weights ready for a Cubii workout 

Click here to join the facebook classes online!

Click here to learn more about Cubii.

But these are just my escapes during this pandemic.  There are still many questions about the Corona Virus, COVID-19 and MS answered in the links below:

MS advocate, Cathy Chester, wrote a beautiful blog piece answering a lot of questions.  Click here to access her blog, “AnEmpoweredSpirit” or click on image below:

Another resource that has helped is the Wahls Team.  Here’s what they have to say:

INFO about COVID-19

I spoke with Dr. Terry Wahls and the Wahls Team.  They have a lot of great information over on their website - click here.  I found the following to be extremely useful:

From the Wahls Group: 

“As always, there are many actions we can control and take immediately that can have a major impact on our health and the health of others. Here are several ways you can improve your resilience and increase the probability of an infection being mild. Remember to work with your personal medical team to reduce your risk of contracting COVID-19.   

1. Avoid all non-essential travel and non-essential meetings. 
2. Improve the quality of your diet by removing added sugars, white flours, and processed foods. A high–glycemic index diet dumps a lot of glucose (sugar) into your bloodstream, which decreases your immune cells’ effectiveness at protecting you from illness. Avoid paleo-approved treats, which still have too many high-glycemic ingredients. Focus on vegetables and meat (legumes and gluten-free grains for vegetarians and vegans) and get rid of sweet desserts. [1-4]
3. Get enough sleep, preferably 7 to 9 hours[5]. Sleep is vital to keeping immune cells ready to fight viral infections. Sleep deprivation suppresses your immune system’s innate ability to act as the first line of defense.  
4. Wash your hands with soap and water vigorously for 20 seconds and avoid shaking hands to minimize the spread of the virus. I recently saw a great infographic that said “Wash your hands like you have just chopped hot peppers and are about to put in your contacts.”
5. Wash your nose and sinuses twice a day with a Netipot®. This cleans your nasal tissue and reduces the virus’s ability to take hold. 
6. Monitor your temperature. If it is above 100 degrees F (37.7 Celsius), self-quarantine for 14 days.  
7. Stay home in your room if you become ill. If you develop a cough, sore throat, and runny nose do not go to work or frequent public places, which will spread the disease, perhaps to an at-risk individual for whom an infection could be deadly. Stay in your room and do not infect your family!. 
8. Check your vitamin D level. If your vitamin D level is below 20 ng/ml, you are at increased risk for infection. Even at levels below 40 ng/ml, the risk for a wide variety of poor health outcomes goes up. If your levels are low, work with your personal medical team to increase your vitamin D level to get to the optimal range (top half of the lab’s reference range). Do not overshoot your vitamin D level however as that may become problematic as well. See https://terrywahls.com/shop/ for tests you can order and obtain directly.

Here are some natural remedies that Dr. Terry Wahls uses often in winter to help her and her family avoid and treat illness.  

1. 1. Eat raw garlic, which boosts your natural killer immune cells. Daily consumption of raw garlic can help prevent illness and reduce symptoms if you aren’t feeling well. When I develop symptoms, I eat raw garlic four times a day [4]. 
   2. Drink fire cider, which is a combination of apple cider vinegar, garlic, peppers, horseradish, and other herbs that amplify the natural killer cells. I take one tablespoon a day to prevent sickness and 1 tablespoon four times a day if I am already feeling ill. 
   3. Get more vitamin C. Daily doses of 250 to 500 mg once or twice daily can amplify immune cell activity and strength. We can’t make our own vitamin C. When we become ill, our vitamin C needs to increase. Nutritional biochemist Linus Pauling famously recommended additional vitamin C at the onset of the common cold (another coronavirus) [7].
   4. Get more pre-made vitamin A (retinol). I recommend eating liver (6 to 8 ounces) once a week or take organic liver capsules. Liver is an excellent source of the pre-made vitamin A. You can visit https://terrywahls.com/shop/ for the brand of organ meat capsules I suggest to my patients who choose not to eat liver or organ meat. 
   5. Get more zinc. Zinc deficiency is very common in those with chronic disease. Adding a zinc lozenge (5 to 50 mg) during the winter may be a wise protective measure for anyone worried about COVID-19 risk.  
   6. Consume more fermented foods such as kimchi, sauerkraut, dairy-free yogurt, and kefirs. The probiotics in these foods help modulate the immune response, lowering the risk of septic shock in response to serious viral infections. Sauerkraut is also a good source of vitamin C. 
   7. Elderberry syrup has been shown to be helpful against the influenza virus[9]. However, elderberry has also been demonstrated to increase the production of some cytokines[10]. For that reason, I do not recommend elderberry for COVID-19 related symptoms. It may increase the risk of cytokine storm and more severe reaction. For that reason, I would NOT use elderberry syrup at this time. 
   8. Get more omega-3 fatty acids in your diet or in supplement form. Omega-3 fats are necessary to make resolvins, a signaling molecule that turns off inflammation once the infection is under control or the repair process has been completed [11]. An insufficient omega-3 fatty acid level may contribute to NLRP3 and NFKappaB, driving high levels of cytokine that cannot be modulated correctly by the lungs, leading to cytokine storm and lung damage. Grass-fed meat, wild fish, and fish oil are good sources of omega-3 fatty acids. Hemp, flax, and walnut oil are vegetarian sources.

Here are the links to the CDC and WHO coronavirus sites:

https://www.cdc.gov/coronavirus

https://www.who.int/health-topics/coronavirus#tab=tab_1

Look for your local public health resources as well. Here is the Iowa coronavirus site. 

https://idph.iowa.gov/emerging-health-issues/novel-coronavirus

Social Distancing with Friend - stay safe!

Keep moving as best you can!

With my Quaranteam

Sponsored: Making Progress With MS: Watching For and Talking About Signs of Progression

This post is part of a paid collaboration between myself and Novartis Pharmaceuticals Corporation.

I love a good compliment.

But sometimes the response can be complicated.

Tim and Caroline

“You look great,” says my friend.

Little does she know that the disease is wreaking havoc from the inside.

What do I say? “Actually, I feel like there is a 9 volt battery pulsating down my left side, I can’t see straight and want to go back to bed?” Or just say the usual, “I’m fine, thank you.” The bail out answer for many with MS.

Today my MS is invisible. Then, there are times I need a cane or wheelchair or other assistance. But today it’s only seen or felt by me.

The invisibility of symptoms can make it difficult to manage the potential progression.

It becomes easy to ignore the MS when possible, to think we can live and do anything we want without the consequences. This seems so desirable, to just live, and not think of our limitations. But ignorance, whether chosen or not, comes at a great cost and one that we don’t want to pay.

While we can visualize our wellness and happiness to help us achieve our goals, we don't want to look the other way. In an effort to not let MS consume us, we often ignore it. But ignoring key symptoms could lead to missing signs of progression.

Potential MS progression

Around 400,000 people are living with MS in the US.¹ Of these, 80% of patients living with relapsing remitting MS (RRMS) have the potential to progress to secondary progressive multiple sclerosis (SPMS).²

The uncertainty of progression may lead to anxiousness about the future. We can choose to ignore this uncertainty or we can choose to help manage our future by taking preventative measures. MS progression can show up in many different ways. It’s important to look out for any new or worsening symptoms, no matter if they are big or small.

There are 8 functional areas to keep an eye on, including:

• Assistance required to walk
• Weakness or problems moving limbs
• Problems with coordination
• Bowel and bladder issues
• Trouble with memory or concentration
• Vision problems
• Difficulty with speech or swallowing
• Numbness or loss of sensation

But whether you have RRMS or have progressed, disease management plays a role in maintaining quality of life. Living with MS is a constant battle of disease management, awareness and gratitude. But most important is the communication between the person living with MS and their family, friends and doctors. All of these people provide essential feedback about our illness and can help us when we need it most.

Here is what we can do today:

From day one my neurologists taught me to treat the disease, treat the symptoms, and I will live my best life. She was correct. I couldn’t walk or see unassisted when I was diagnosed. I looked really drunk and it took years to slowly re-find my body and myself. Everyday can be a struggle with MS.

It’s time to slow down, relax, chill, and take a load off. Literally, release yourself from the pressures of having MS.

These are some tips that help me get through this life:

Attitude.

We can carry a chip on our shoulders. We can be angry. We can be resentful. But we can also learn to be grateful. We can learn to be positive and to help keep our MS on the best track possible.

We can make an effort and hopefully make a difference.

We’re not talking rose-colored glasses. But be honest and look for the positive. Smile at your MS and smile at yourself. You deserve it!

@NASA enjoying @JPL’s Lucky Peanuts! 

Keep track of your symptoms.

Find an easy and sustainable way to track your questions, symptoms and thoughts. Use a journal, MS app or notes on your phone and create a simple list to share with your doctor. Review this list with your friends and loved ones, see if there is anything you are missing or not remembering.

Even if the symptoms seem commonplace to you, include them on your list to your doctor, especially if they are new or getting worse over time. Every little thing so they truly know what is going on in your body and brain.

Talk to your doctor.

Ask questions and share your daily life experiences.

Topics to consider:

• How is your MS on a daily basis?
• Which symptoms are most problematic? Least?
• Over the last 6 months, have you noticed new or worsening symptoms in the 8 key areas mentioned above?
• How does the MS impact living your best life? Are you not doing something in life that you want to, and if so, why? Are you able to bounce back after relapses like you have in the past or do symptoms linger for longer?
• Review MRI and other test results with your doctor.

Discuss symptoms and any changes in your disease. MS can wreak havoc on the body. It’s the day-to-day crud from the symptoms that can cause a decrease in quality of life.


Family and friends.

If you live with family or spend a lot of time with someone they may begin to notice your bad days versus the good ones. They may even comment and suggest slowing down or something else that might help. Often we want to snap back and say, “I’ve got this!” but in reality, they are right. We often need to slow down and heed our symptoms.

So many people with MS are go-getters. We like to see things done! But that also means we often thrive on burning the candle at both ends. And this is just not good for the MS.

Listen to your friends and family. Ask them questions and listen to what they say. “How do I seem to you - regarding my energy and MS symptoms?” This awareness helps build better understanding of MS for both patients and loved ones and may help detect potential signs of progression.

What I learned from friends, family and doctor.

My friend, Rora, noticed how my MS was worse during allergy season. My dad taught me the importance of not sweating the little things because, “It is what it is.” My mom helps me find ways to be more independent, encouraging my self-esteem at times when it’s low.

My love, Tim, reminds me about slowing down, saying no, taking care of myself and setting boundaries. My longtime friend, Susan, noticed that I have learned to ask for help. And Barby, who has been my cheerleader for the last thirty years, encourages me to strive with the perseverance and tenacity needed.

Caroline and long-time friend, Barby

My doctor reminds me that we need to care for ourselves no matter how visible the symptoms. There is an importance of mind over matter and staying positive but not foregoing important tests such as the MRI. And keep up with doctor visits.

Live life as best as possible.

What we do today affects how we live in the future, no matter the illness. With MS we know certain things can help prevent some progression:

• If you smoke, find a way to stop.
• Eat a heart-healthy diet.
• Watch vitamin D levels and discuss with doctor.
• Find a fun and safe way to exercise and enjoy the outdoor sunshine.

The one thing I have to remind myself all the time is that no one has extra special powers, especially our loved ones and doctors. Bring notes, be honest and work together to track your disease and potential progression, and live the life you want with your MS.

References

¹Multiple Sclerosis Association of America. Frequently Asked Questions. https://mymsaa.org/ms-information/faqs/. Accessed September 10, 2019.

²Multiple Sclerosis International Federation. Atlas of MS 2013. http://www.msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf.Accessed July 22, 2019.

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