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 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:

“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. 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:
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.

Novartis Pharmaceuticals Corporation            
East Hanover, New Jersey 07936-1080                                ©2019 Novartis                              1/20                                     XSM-1377785


The Rocky Ride of MS and What Helped

Multiple Sclerosis is like riding a roller coaster in so many ways.

This past year has shown a lot of love for this Girl with MS.  Some symptoms subdued, others raised their voices.  But top on my list was meeting so many wonderful people living with MS across the country, in person and around the world via the internet and telephone.

Despite my good year and pleasant holiday, the MS reared its ugly head with a bad case of pseudo bulbar affect or PBA.  One minute laughing, the next in tears.  I just call it the funk.  And it got a holt of me bad the other day. 

The fact it's the end of the year caused a bit of the emotions. Focussing on what did not get done in 2019 led me down a path of quick depression.  Even healthy people have to give themselves a break, but the pressure and disappointment that one can put on themselves can be debilitating.  And that's where I found myself.  

You know what helped?  Knowing my new neurologist and his nurse were just a phone call away.  And second, reaching out to all of you, reading your stories and reminding myself that we can get through this disease.  We have each other, and that, my friends means the world to me.  

Here are just a few of the great folks.  They all do amazing work/writing/advocating.  Click on their names to visit their blogs/websites.  This list will be growing!  



with Cathy Chester



with Dave Bexfield

This Group! Amazing folks


with Lydia Emily
with Ashley Ringstaff and Nicole Lemmer 
Nicole Lemmer - My New Normals


with Carolyn Kaufmann

 Carolyn Kaufmann - Without the Weight


with Dr. Barry Singer 
Dr. Barry Singer - MS Living Well  


with Cheryl Hill - marathon runner
Each and everyone of these people are deeply involved with MS.  Most of us living with it.  Such inspiration from all of you.  Thank you and here's to a happy, healthy new year.  May 2020 find you with peace and love and minimal MS junk.

I know there are many folks missing off this list.  It's a work in progress.  Been making some Hoppin' John and it's ready for chow time.  I'm ready and dang, I'm hungry!



#takeTHATms!  


Holidays, MS and Surviving the MS Dictatorship

How did it get to be December? November flew by as usual. As did the rest of the Fall. One of my favorite times of year, the Fall. But then I pretty much love every time of year.
Joshua Tree, CA by Caroline Craven
The holidays can be tricky with MS. The emotional roller coaster, the disease itself, the losses that result. MS is not for sissies. Throw in the holidays and one could have TNT on their hands.
It's easy to get wrapped up in the festivities, duties or even the burdens of the holidays: you're feeling good, things are rolling along and you're getting it done!
Until one day you wake up and, well, start freaking out. "How am I going to get it all done?" The money, the chores, the obligations. It can all be so everwhelming. And throw in an unreliable and random disease like MS and the simplest thing such as getting out of bed can be impossible.
MS is often called the invisible disease. Folks think you look great so you must be and feel great. Nothing could be further from the truth.
I had a lovely Thanksgiving this year but my MS threw me for a couple of loops. The emotional roller coaster seemed unending. Up one morning, down the next. And I mean really down. I don't like feeling that down. Weakness and pain wrecked havoc on my body as well. Hit with a 24 hour bug, the flu like symptoms lasted days and sucked the life out of me. Energy gone, balance gone, I envied the elderly man leaning on his wheeled walker while I held up the wall of the church with my back.
"How am I going to get back to the car?" Weak from the flu, weak from MS, my legs were trembling. I had no cane. No walker. No friend to hold onto. Stealing the last bits of energy, I rallied forth and made it to the car to wait for the family to drive us home. All the time thinking, how am I going to get everything done for holidays when I can barely walk a block to the car?
Oh how I despise this part of the disease: being forced to slow down despite what you may want to do. No one likes to be dictated. MS is a disease that will teach you to live under a dictatorship. But like any life we live by our choices...so what is it going to be?
Here's my game plan for surviving this years MS dictatorship:
  1. Listen to my body
  2. Listen to my MS
  3. Make Priotities
  4. Set limits and boundaries
  5. Be flexible with expectations
  6. Be compassionate and easy on Me
Doesn't look like much but it is. It all seems so simple. So logical. But yet, so easy to overlook when actually living our lives.
Today I'm taking charge of my own MS dictatorship for the next month. One day at a time.
The holidays will arrive whether I'm well or sick, so time to do this right and get on with life. Time to manage my MS like an iPhone battery: to conserve and preserve energy to maintain quality of life with MS.
Off to get the day started and take my own advice!
Let's do this!

I posted this originally a few years ago, but it rings true every year, except for the flu.  Whew!  No flu this year!

Finally, a New Neurologist... And I am Psyched!

“Caroline,” he called.  “Caroline” 

He looked like the photo on his website.  

Wow, the doctor is calling me in for my exam.  

“I’m impressed by your service,” I said. 

“We do things differently,” Dr. Shubin replied. 

And, boy do they!  

Upon entering the office I could see plenty of MS information. I even found myself on their table!  

PBA - an effect from MS & emotional rollercoaster 
It all started with a frustrating doctor visit a couple of months ago.  My neurologist and I did not communicate well.  Feeling intimidated and second-guessed, I started doubting her expertise.  Not a good place to be. Years are gathering and I am getting older. Fears of what might happen with my MS are rising.  I was scared.  

But, not now.  

Just one doctor visit gave me so much confidence. He said there is a place I can go, Casa Colina, that is famous for rehab.  They even have driving machines to help you learn to drive again. Could you imagine?  Being able to just hop on the freeway and go where ever you wanted with out paying for a ride share?  Or bothering friends or family?  Imagine the freedom and independence. I’m tearing up just thinking about it.  

Dr. Shubin covered so much and gave a thorough exam. Despite the years of neurology appointments it’s been way too long since one has given me a proper exam.  Not since my diagnosing neuro retired.  

We talked about life, how MS is working, he made it so easy.  I am still in awe over the experience. I have had doctors tell me they don’t know what’s wrong because I don’t’ “present”.  

We talked about disease modifying treatments and opened the conversation for later discussed.  

Wow.  

About to meet my new Neurologist! 
Just feeling the love from his office.  It was the best experience since I was diagnosed.  The love and care is amazing.  The expertise and knowledge is utmost.  This is quality and I’m feeling even more ready to conquer MS.  

Join me in my battle.  Let’s conquer MS together!  



#takeTHATms!    

Talking High-Dose Biotin with Dr. Aaron Boster

I saw this great tweet by Dr. Aaron Boster the other day and I couldn’t stop laughing. 

Dr. Aaron Boster

Yes, this is what high-dose biotin can do.  What’s even better is what it can do for MS, at least for mine.  

My annual physical was coming up.  

I had one instruction:   Go off my high-dose biotin for a few days before blood work was done.  Last year my thyroid test showed a false result. 

Research has shown that high-dose biotin may provide a false positive result for the thyroid and it is suggested to go off the supplement for a few days to a week prior to the test.  

Many of you know that Myetin, a high-dose biotin with NAD+, has been part of my regime for about a year and a half now.  After taking it, I found that my energy increased and my pain and spasticity reduced.  It also seems to help keep my cog-fog at bay.  These are three things necessary for me to function at my best.  

Not as much hair as Dr. Boster, but it’s getting there!
But the fact was, I was scared to go off of my Myetin.  Everything has been working really well these last couple of years with regards to managing my MS symptoms.  I did not want to change a thing!  

What if I relapse? 

I was freaking out.  And I was traveling across country for a bunch of MS advocacy work.  I could not afford a relapse.  I couldn’t even afford to not be on my best game possible.  Due to some weird regulation I am not allowed to talk to my doctor outside of appointments and relaying messages via a nurse did not instill confidence in me.

So, stubbornly, I did not wash out the drug before my blood work.  

Interestingly the results showed normal thyroid activity this time.  



Enjoying life when I can. 
My interest was piqued. 

I spoke with the folks at Avior Nutritionals (maker of Myetin) and was informed that taking the supplement does not guarantee a false thyroid test but it can happen. 

Unfortunately my lack of conversations with my neurologist did not lead to confidence on my end.  So, I went to a leading expert on MS, the much-loved Aaron Boster, MD from Ohio.  

Dr. Boster is not familiar with Myetin, but as a practicing MS specialist is quite aware of the potential benefits of high-dose biotin.  

Boster, who has worked with thousands of MS patients in Ohio, has over 16,000 subscribers to his YouTube channel, and is quite active on social media.  His regular videos on MS are insightful and smart creating a great resource for those newly diagnosed and those living with MS for years.  




High-dose biotin is showing promise

“The preliminary research is so compelling that I will routinely recommend high-dose biotin,” Dr. Boster said. 

Benefits are showing potential in slowing disability in those with progressive MS, as well as slowing brain volume loss.  It may also have “re-myelinating potential. “These are very important things to do,” said Boster.  He further explained that high-dose biotin is a very safe compound to take and has not shown any risks to date.  

“There have been some large, properly designed clinical trials designed to answer the questions of the benefit and risks. But the jury is still out,” explains Boster, “the research needs to be replicated.” 

Clinical trial results pending  

A multi-campus clinical trial involving 642 people with MS is looking at the efficacy of MD1003, a form of high-dose biotin, in disability of those with progressive MS, especially gait issues. This double-blind study includes 92 facilities and recently wrapped up data-collection. Results will take time to process but I’ll share them when available. 

When I told Dr. Boster about my failure to comply, he expressed his concern. (Which is just what I needed!) He explained that thyroid tests use biotin in their assays, and by not washing out my system, I may not get honest results.  

We talked about the emotions of changing routines, fear of relapses and then focused on ways to gain confidence. The partnership between patients and doctor is vital in this confidence. I am grateful to Dr. Boster to be able to have this conversation.   

“I don't recommend high-dose biotin for everyone,” said Boster, “but if a patient is interested in preserving the brain reserve, managing brain-volume and slowing progression then it’s a conversation to be had.”



Not always easy, but I keep at it. 

Doctor Patient Partnership

This experience reminds me of the importance of a good working relationship between doctor and patient, a true partnership.  I obviously did not have one and have since found a new doctor.  I have not seen him yet but the MRI is scheduled and so is the neurology appointment.  I’m psyched.  

Thank you, Dr. Aaron Boster, for helping me better understand the potential for high-dose biotin. And the importance of having confidence in managing my MS with my neurologist.  

Thank you, Avior Nutritionals, for sponsoring this post and for supporting the work of those living with MS.  

Click Here for more information about Myetin (affiliate link)
#takeTHATms!