Treating MS symptoms and finding Quality of Life.

 For seventeen 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.  My success has been based on a natural, holistic approach to living. Life skills and stress management have played major rolls in my success.

Vitamins and supplements have always been a part of my treatment plan.  Twenty years ago before the MS, my life included yoga, massage, acupuncture, vitamins and natural, healthy eating.   This plan continues today.  

But there is a lot of snake oil out there.  And a lot of hoopla.  Now I LOVE natural and alternative treatments more than anyone.  But there is a smart way and a not so smart way to consume these in your MS Plan.

Do your research.  I have. 

As a health journalist for Healthline.com, my research leads to many enlightening opportunities for MS patients.  While we work with our neurologists for the best DMT, there are risk factors that we can control.  

Based on solid research, I have made some changes that seem to have had major positive effect on my health. 

I first learned about high dose biotin while researching this article, ”Study Looking at High-Dose Biotin as a Treatment for Multiple Sclerosis,” for healthline.com.

The exact role biotin plays in the progression of multiple sclerosis (MS) is not known, but initial studies show it both benefits myelin and provides energy for neurons.   

Biotin is another name for vitamin B7. 

Biotin is available over the counter, but the dose you get is much smaller than what is being tested – about 10,000 micrograms compared to 300 milligrams.

 “Biotin is different than other agents,” Dr. Margaret Burnett, associate professor of neurology at the USC Keck School of Medicine explained in the Healthline article. “While other approaches have been designed to work with the immune system, high dose biotin is designed to preserve and support the nervous system by protecting its oligodendrocytes and neurons.”

The supplement is showing enough promise for some neurologists to prescribe biotin for their patients.

Dr. Howard Weiner, professor of neurology at Harvard Medical School told doctors at the Race to Erase MS Forum that they recommend 300 milligrams of biotin for their MS patients from a compounding pharmacy with the caveat that it is a bit pricey at about $150 per month. 

High-dose biotin is considered relatively safe with no downsides. But it can affect blood test results for a few conditions such as thyroid disease and should be stopped prior to blood work. 
Biotin is also available naturally through a healthy diet. Humans, or any mammal, cannot synthesize biotin and must obtain it from dietary sources such as eggs, dairy, almonds, whole grains, and meat. But one can not consume enough food to acquire the high levels needed for impact.  

During my research I came across the product, Myetin.  

Myetin is a dissolvable tablet with 300 mg of high dose biotin plus 50 mg of NAD+ per daily dose, without having to go to a compounding pharmacy and a 3-month supply is only $144.   
 
The package insert reads, “Designed for the nutritional support of the individual at risk of oxidative stress (ie free radical damage), Inflammation and Reduction in fatty acid production.” 

What does this mean to me as a patient whose sick and tired of trying new things? 

As a journalist of course I couldn’t take the product packaging or the website at face value.  I have seen the research for biotin but know nothing about NAD+.  

Interviews with several experts helped me understand the process and the potentiality of Myetin.  

We don’t know the exact cause of demyelination but know that there is a connection with oxidative stress, inflammation and reduction in fatty acid production.  “We know they may potentially play a critical role in the demyelination and neurodegeneration observed in MS”  Koch et al. 2006

NAD+ is a derivative of vitamin B3 and is required for a number of functions at a cellular level. It is necessary for energy metabolism and cellular DNA repair.  Cells need energy to regenerate. 

Oxidative stress damages DNA, which reduces NAD+ that subsequently reduces ATP energy production.  

To date, we know that NAD is important in the maintenance in normal cellular functions.  “It is likely that this molecule is of therapeutic relevance in MS,” states the Brady paper. 

Studies have shown NAD+ levels are significantly different between the MS subgroups:  Higher levels in RRMS compared to PPMS and SPMS when corrected for age and gender.  

It was worth a try to give Myetin a shot!  

But the fact is, I was already feeling top of my game.  Better than I have been in years. 

Maybe I’ve become complacent.  Even though I’m feeling great couldn’t I feel even better?  Do I even remember how it felt prior to the MS some 16 years ago?  

My pillbox was to now include two Myetin absorbable tablets.  One for morning and one for evening.  

Well dang if these things don’t taste great. 

Earlier this year my pillbox was completely revamped because swallowing pills became a problem with my MS. Ten in the morning and ten again at night. Too many pills!  So now there are only three to swallow and one to dissolve.  I think I can add two more, great tasting, dissolvable tablets to my plan.    

Well, now these Myetin tablets are considered my Scooby snacks.  Only after I’ve taken my swallowed vitamins am I allowed to take the Myetin.  Silly I know, but it works for me.  

It’s important to understand why the Myetin is a dissolvable type of tablet.  

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.  

The recommendation is to chew Myetin slowly and allow it dissolve in your mouth. This process helps what's called sublingual absorption- meaning the nutrients are absorbed directly into your bloodstream rather than passing through your digestive system. 

 I wrote this article, “How gut bacteria eases autoimmune diseases” as well as this important piece about Probiotics and gut health.  

THE FIRST 30 DAYS

Myetin has now been in my regime for over thirty days.  Here are some of my first observations:  

It’s easy to take. This is important for people living with MS.  Difficulties remembering, or trouble swallowing or just being tired can make taking medicine difficult.  The easier the better for adherence.  This one is easy.  

In the beginning I was forgetting to take the evening pill as it was my only nighttime one to take.  But then, as my health was changing, I didn’t want to skip a dose at all.  

The results have been encouraging!  

I’ve been enjoying a better and noticeable bounce back with energy levels.  I get tired during and after activities but then, a few minutes later, I’m ready to go again.  I’ve bounced back! 

I’m also sleeping better.  This is possibly a result of more energy and more time outside getting exercise and sunlight.  Definitely experiencing less “Cog-Fog” especially in the afternoon. I have more energy during the day and it seems to be more sustainable. 

In addition my spasms and pain have been reduced significantly.    

In order to better understand this I interviewed a few folks.   

First I spoke with Stephen Camp of Avior Nutritionals, the makers of Myetin.  He explained that Myetin works at a cellular level.  “The human body is an amazing machine but we destroy it.  In ways we eat, live.  We destroy it,” Camp told me.  

“What is your Dr’s first line of defense?” he asks, “Steroids, or other drugs?  What are you doing to address the underlying symptoms?”  

There is no cure for MS and the medicines for many of the symptoms are designed to just cover things up. There is no product on the market that is designed to help ease MS symptoms.  In order to ease the symptoms we must heal the body from the inside. We need to help the body do what it is supposed to do.  

“We couldn’t live without NAD+,” said Camp, “It is necessary for basic cellular function.”  He further explained that oxidative stress and free radicals can reduce these NAD+ levels.

NAD+ should not be confused with a lot of the precursors on the internet like NR [Nicotinamide Riboside]. 

Dr. Thomas Fahey, a retired dentist, was diagnosed in 2013.  He started his own high-dose biotin regime a few years later, filling his own capsules with quality biotin.  It was not easy.  “It was worth it, cause I was feeling better,”  Fahey told GWMS.     

Fahey met Mr. Camp and switched from his home-made product to Myetin.  

After taking Myetin, Fahey said “I felt a lot more capable, mentally and physically better. Cognitive and fatigue are my main two issues and both are better.”  

Another MS patient, Amy, started taking Myetin about nine months ago.  She was diagnosed about 13 years ago – 

Experiencing a lot of Nerve pain she began researching natural remedies and came across Myetin. “I used to wake up during the night with foot cramps, but now they totally gone down to maybe once or twice a month” adding that it has helped significantly with her pain and other symptoms. 

“I just feel better on it!” Amy told us.   

And you know what, I do too.   I just feel better.   

Knowing that the research is there, that the product is natural and already occurring in the body and that it’s a basic necessary aspect of cellular regeneration and health. I am feeling confident that Myetin is an excellent choice to help me manage my MS.   


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    This blog post brought to you by Avior Nutritionals and Caroline Craven. For more information on Myetin, go to www.myetin.com or visit the Myetin page on facebook.




Self-Care Challenge: Sit Quiet and Rest the Mind

Challenge accepted!


Time to "Make a Change - Make a Difference"

“SIT QUIET and Rest the Mind”

Start with 1 minute, one day, then grow to 5 minutes for five days.

Set a timer on your phone/watch so you're not thinking about time.

As your mind begins to wander, remind yourself that everything will be there when you are done.  And, that you will find answers and solutions at that time but for now we are to rest and be quiet.

Breathe deep.  Inhale through the nose.  Exhale through the mouth.  Seek always the quiet.

Record your thoughts and emotions, your journey, in the My Journal section of the Health Storylines App.

Find a quiet place and clear the mind.  This will not be easy but let your mind find peace in absence of thought.
Register at the Health Storylines App,  
use the My Journal tool.



Wellness begins in the heart and with a grounded body mind and soul.

Take action toward wellness with the My Journal section of the Health Storylines App.

"I am worthy of a healthy life"

Let these intentions carry you away into a beautiful positive life.



Register at the Health Storylines App,  
use the My Journal tool.

SHARE your experience:

Instagram – Facebook – Twitter

Because together we’ve got this!

#challenge #makeachange #livebetter #spon #takethatms #selfcareMVMT

Register at the Health Storylines App,  
use the My Journal tool.

 #selfcareMVMT

This movement brought to you by Caroline Craven, GirlwithMS, Self-Care Catalysts and Health Storylines

Register at the Health Storylines App,  
use the My Journal tool.


MS and Medicare - a guest blog post

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

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

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

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

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

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

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

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

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

There are three types of MS:

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

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

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

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

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

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

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

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

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

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

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

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

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

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