Brain Restoration, Sleeping with Sabrina and NAD+

2:07 AM and I’m wide awake.

Seems to be a trend for me lately. Sleep will happen, eventually, but at what cost to my health?  I’m ready for a change.

During one of my conversations with Stephen Camp, the founder of Avior Nutritionals, (makers of Myetin - a high dose biotin with NAD+), he brought up the concept of brain restoration.

Brain restoration?  We can restore our brains?  I love this concept!


Courtesy iStock

I definitely wanted to learn more.

So, he set up a meeting with a functional medicine specialist, Dana Leduff, CHC and practice manager for Dr. Knight at Knight Integrative Medicine.

Have you ever heard of NAD+?


I have heard mentions of it but really do not understand it fully.   I was psyched to learn how brains restore and what this means for us living with MS.

NAD+ levels decline as we age, or so the research indicates.  AND it is critical for cell generation and health.



“NAD+ creates calming neurotransmitters in your brain,” Leduff told me.   OK, my MS brain definitely needs calming.

I took this straight from the Wikipedia - “Nicotinamide adenine dinucleotide (NAD) is a cofactor found in all living cells. The compound is called a dinucleotide because it consists of two nucleotides joined through their phosphate groups. One nucleotide contains an adenine nucleobase and the other nicotinamide. Nicotinamide adenine dinucleotide exists in two forms: an oxidized and reduced form, abbreviated as NAD+ and NADH respectively.”

We are talking about the oxidized version, NAD+,in this article.  But what does this mean for me?

“NAD+ is a cofactor involved in the Kreb cycle.  It stimulates ATP which is the fuel equivalent that runs all of our cells,” Leduff explained, “NAD+ is a kick start for the engine.”

The Kreb Cycle is also known as the TCA cycle (tricarboxylic acid cycle).  It’s basically the chemical reactions to release stored energy through oxidation of acetyl-CoA derived from carbohydrates, proteins and fats into adenosine triphosphate (ATP) and carbon dioxide. It provides the process to make the fuel we need to run our engines. NAD+ is this fuel.

“It affects a lot of other metabolic pathways.  If depleted or burned through, adding NAD+ could help gain greater resilience,” she said, “We could have more stockpiled.”

“Imagine having a bad starter to your car,” she said.  Well, that’s easy to do!


“If you could take a product that could provide NAD+ it could help the Kreb cycle.”  Which in turns help the brain restore by helping mitochondria reach a healthier state.  

“An out-of-balance level of NAD+ may be a result from genes that don't make enough or don’t break down the macronutrients to pure NAD+,” Leduff informed me.  “When they become in balance it could create changes in circadian rhythm and sleeping patterns.”

Leduff further explained, “As in gardening, we need soil enriched with the right things.  In the human body, NAD+ provides the right fuel.  It turns a bunch of switches on that might have not been activated due to limited fuel.”

“We want to send as many healthy microbiomes to the brain,” informed Leduff as these could help restore the brain

Research claims benefits.


One interesting article I found was put out by the Translational Medicine of Aging.  The title hit a chord with me, “Therapeutic potential of boosting NAD+ in aging and age-related diseases discusses NAD+, it’s benefits and clinical usage.”

NAD+ is synthesized by natural NAD and several precursors.  Precursors have shown possible benefits in research.  But, “NAD+ in Myetin is the activated form of NAD+ which the body can use in its current form and is not affected by any genetic polymorphisms,” stated Leduff.

One precursor, NR, was found to be beneficial for glucose levels in diabetics.  In neurological diseases such as Parkinson’s it’s been shown to help memory, motor function and mitochondrial function as well as protect from neuronal cell death.

Another precursor, NAM, helps with oxidative stress and more:  In the model of obesity, it has able to restore glucagon storage to similar levels as age-matched standard-diet mice as well as ameliorate diet-induced hepatosteatosis, oxidative stress and inflammation.

The study found that inhibiting the age-related decline in NAD+ levels is critical for preventing age- or disease-related frailties. It also found that strategies that could potentially boost NAD+ levels include exercise, fasting, and maintaining a healthy diet, and by boosting with supplements.

But these precursors are not the same as NAD+,” Leduff explained.  “And there are many precursors available for sale.”

“Whenever claiming to be a particular molecule. We want a form that’s most bioavailable otherwise those genetic mutations could make  the process more sluggish or not happen at all so the body can’t benefit from it.

Leduff warns, “Many companies claim to have NAD but they are talking about “precursors” of some form.   Avior Nutritionals  has the only blend available that is the pure active form of NAD+.”

Leduff suggested that patients who want to find more personalized health plan, could find their answers in functional medicine.



Sleeping with Sabrina


After talking mitochondria a bit, I still wanted to learn more.  So, I connected with sleep specialist and certified brain fitness coach, Sabrina Cadini .

She does not have MS.

“I was sick and we couldn’t figure it out for a long time, so I decided to heal myself with self care, nutrition, sleep, etc.,” Sabrina said.   A familiar story to so many of us.

“I wanted to share my story and inspire others - switched to coaching. We need to educate people today that there are other options.”

What is a brain fitness coach?

“We help others take care of their brain before it’s too late.  We help with nutrition, exercise, sleep, and self-care.  Are they too stressed or do they need to enhance their brain function?” Explained Sabrina.    

“The body and brain are so tightly connected,” she said, “ For example, if people move the body releases hormones and detoxifies the body - it’s a chain reaction.  They don't realize how the body works and just follows the medicine prescribed.”  

Mitochondria


“I can’t say enough about mitochondria!” Shared Sabrina.

“These energy powerhouses are some of my best friends when I work with my clients. Considering that mitochondria can also help us with cell growth and the support of the nervous system, I can’t ignore their importance in my coaching practice.

“None of my clients knows about mitochondria, but when I explain the critical role of mitochondria as the source of our cellular energy, their view of everyday life and optimal lifestyle completely shifts. They feel more motivated to follow my program that focuses on nutrition, sleep, exercise, and stress management to improve their energy levels and overall health.

“Since mitochondria are directly connected to sleep and most specifically to our circadian rhythm, I always stress the importance of a good night’s sleep. If our circadian clock is impaired due to lack of sleep, or inconsistent sleep patterns, our energy production will decrease, and our overall health can be impacted: symptoms can include fatigue, pain, and susceptibility to illnesses. This, in turn, can negatively affect the circadian rhythm, creating a vicious cycle.


Circadian Rhythm 


“I’m also learning a lot about NAD+ and how mitochondrial dysfunction can result from declining NAD+ levels in our body. I have to say, I feel blessed to live in this era where science and genetics are making progress every day, and more and more research studies give hope to many people suffering from chronic and autoimmune diseases.




Sabrina suggests that once we understand our biological clock, it’s better to understand what we’re doing and going through.

Hormones with light and darkness really run the show. Melatonin night time.  Cortisol and adrenal during the day.

“Understand and take better care of yourself,” Dana recommends, “Be more respectful for sleep routine when the night comes.”


Sabrina’s Sleep Tips


“Unplug,” recommends Dana, “the use of technology is a big disrupter.”

“Watch the blue light  - the kind we absorb during the day via sunlight - but if we keep absorbing it then we can’t produce melatonin so it disrupts the circadian rhythm.”

Then, Sabrina gave me these great tips to help reset the circadian rhythm along with NAD+.

Sleep Tips 

1. Reduce blue light/devices
2. Software called Flux changes color of screen based on time zone to adjust/tint with red as the day progresses
3. Windows 10 on a PC?   Look for screen tint, regulated with red/blue light.
4. Reduce TV, devices, etc.
5. Put phone in airplane mode - reduced EMF (electromagnetic fields)
6. Swannies - Blue light blocker glasses
7. Keep room where you sleep as dark as possible.
8. Consistency is KEY -
1. Regular time to bed, regular sleep patterns
2. Do not catch up on sleep - “if it’s gone, it’s gone.”
9. Exercise can help sleep patterns.  Don’t exercise later in the evening as its stimulating and may cause problems falling asleep.
10. Caffeine - stop by 3pm - leave 6-8 hours before bedtime.
11. Napping - less than 30 minutes, or might enter deep sleep and feel more fatigued upon awaking
12. Relaxation techniques:  yoga, breathing, meditation.

I’m definitely beginning to understand better.

NAD+ is critical for our cells and fueling our brain and body.  It helps keep all those scientific parts in balance and the mitochondria healthy so it can send harmonious energy to the brain.  “Calming neurotransmitters,” Dana called them.

And understanding how the circadian rhythm plays a role sort of ties the whole brain/body connection together in one tight package.

Very curious for sure.  This NAD+ and its role in helping me sleep.   Self-care at its  finest.

Just one more way we can say #takeTHATms!


Conquer MS with Self-Care! Tips and tricks for surviving these Covid Times.

Tips for Surviving 2020 with MS


For nearly 20 years now I have been battling my multiple sclerosis (MS).  Good days, bad days, every which way days.  I’ve had them all.   

 

I could not walk or see unassisted when the MS struck me.  Now I’m thriving in my own MS way.  It’s not the life I was used to or expected for me, but you know what happens when we have too many “plans”.  Time to let go and let life plan itself. Time to move forward with MS.  My success has been based on a natural, holistic approach to living with a lot of monitoring and help from my doctors. Life skills and stress management have played major rolls in my success.

Times like these we can benefit from learning to move forward...read more

TiPS and TRiCKS to stay healthy and cool this Summer:

Importance of Making a Plan B

Escaping the Red Zone of MS

Cooling and Healing Tips for MS

Join GWMS on youtube 

Radio Show - Tips and Tricks for living better with MS

"I'm newly diagnosed with MS - now what?" 

 

MS Living Well Podcast 9: Cognition and Multiple Sclerosis

MAY 21, 2020

 

Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.

Click For Apple Podcasts

Click For MS Living Well Podcast 
 

Dave Bexfield (ActiveMSers.org) along with Kathy Reagan Young (FUMSnow.com), Cathy Chester (anempoweredspirit.com) And many more saved this Girl with MS during some really dark times. And that was before Covid. We have so much love and support out there. Reach out and see what there is to learn. Click here to see the full list of helpers/advocates. We’ve got this!

 

 

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. Focusing 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?  All of these MS advocates and friends Read more...

Football season is a coming, not sure what it will look like but I’m getting ready.  Love my Oregon Ducks and Puddles!  #takeTHATms!
Take the Self-Care Challenge! 

Self-Care is vital in our fight against MS.  What can we do for ourselves?  Life skills lead to better health. One of these skills is to learn to quiet the mind... read more

Potential natural treatments for MS 

Alternative Therapies for MS  

Why me?  managing anger in MS
 

Surviving the Covid Quarantine

Life as an MS patient brings enough uncertainty and stress. 
These last five months have created challenges upon challenges. But it’s also provided opportunities.  I started a sourdough starter as did many people. I can’t eat a lot of gluten as it affects my MS in a bad way but it’s been fun making stuff for the family.  More importantly is that I posted two great resources to learn more about living with MS during Covid.  One is by the awesome @CathyChes at The Empowered Spirt and the other by Dr. Terry Wahls and the Wahls Group.  Did you know that elderberry during this time may not be a good thing?  So much to learn....read more...


 
Take action to potentiate your wellness. 

Other natural treatments for MS symptoms.
 
Keep on Moving if and when you can! It took me awhile to build up my strength after some time off. And this heat will have me down for awhile, but enjoy the little moments and all achievements.  

10 Ways you Can Prepare to Age Well with MS
by guest writer Anita Fernandes

Conquer MS with Self-Care:  GUT HEALTH

Much research has been done regarding gut health and MS.  And let’s face it – our guts are not healthy!  When we take pills by swallowing they have to compete with every other bacteria in your stomach and gut.  This can be a detriment for folks living with MS.  
 

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! 

Watcher: Mystery, Murder, Mayhem and a Lady with MS

Finally!  

A FUN read featuring a lady living with MS but not focusing on her MS. Watcher, by Jason Stokes, is a tried and true murder mystery and it just happens that the leading lady has MS.  And those with it will relate as she struggles obstacles with adrenaline us MS warriors know about.  The kind that you dig up from the bottom of your well when your well is empty. The kind that comes from survival, from necessity.  

The story flows freely and frantic enough to keep the adrenaline going and the intrigue in motion. Thoroughly enjoyable and well done, I thought the author had MS because Jason Stokes nails it on what it’s like living with MS, or at least for me.  So many times I thought, “I know that feeling,” only to be swept up by the story and taken off to some ledge to hang on til I turned the page.  Not sure I’ve read that quickly in a long time! 

Any way, I had to share with you all. Need a distraction?  Try Watcher by Jason Stokes.   This Girl with MS sure enjoyed it!     

Click here to purchase

*My opinions and this is not my affiliate link - proceeds go to author* 

Taken directly from Gestalt Publishing:     


What she saw may cost her life.

Teri is a watcher. A silent witness to the lives of others. Robbed of her strength and mobility by a devastating disease, when she witnesses a crime so vicious it forces her to choose between her own safety and a woman she's never met, she'll have to untangle a web of corruption, clear her name and catch a killer before she's the next to disappear.

 

     Watcher was written as a love letter to the MS community and everyone struggling with chronic debilitating disease. A message on every page that though disability can steal your strength, rob you of your physical assets and change how the world chooses to perceive you, you are still strong. You accomplish more before getting out of bed than most people manage all day and that deserves to be celebrated.

    Teri is flawed but she is human, like the rest of us and she is empowered with the indomitable gift of an unbreakable spirit.

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.