I was just diagnosed with MS. Now what?

New to MS?  or want to feel better with your existing MS?   

There is so much to cover with this title which is why my new book is in production!   But in the meantime take a look at these comments and tips.  Most tips below are linked to articles that I have written as a Patient Expert, Health Journalist and Life Coach.  Please click on the link to see studies, articles and more.  

Become an MS Warrior


1.  Take a deep breath.  It will all be OK.  You are in for a change, but the levels vary for everyone.  Just know that things will get better and life will continue.  MS hits everyone different.  It will be important to be very compassionate toward yourself and your life as this disease unfolds.    

1.    Find a good neurologist – an MS specialist.
2.    Understand you are going through a change.
3.    Emotional balance may seem to slip away – seek help. 
4.    Talk with your MS Dr. regarding Disease Modifying Therapies (DMTs)more
5.    Love YourSelf!  Its good for MS!
6.  Check out My Favorite Resources Page - full of supplements that have worked for me.  

2.  Modifiable risk factors:

MRF's are choices we have control over. Things we can start or quit depending upon our needs.  While none of these in particular cause MS, there is substantial proof that the following actions are beneficial for MS patients:

1.    If you smoke cigarettes, quit. 
2.    Reduce, respect or quit alcohol.  
3.    Limit salt intake.
4.    Reduce, respect or quit caffeine
5.    Do not use artificial sweeteners such as aspartame  (excitotoxins)
6.    Take additional Vitamin D(if low)
7.    Take Vitamin B12 (if low)
8.    Take an NRF2 activatorsuch as Protandim™ to fight oxidative stress. 
9.    Eat a healthy diet.  Nutrition is everything!
10.Eat a diet high in fish
14.High-dose biotin and potential for MS. My FAVORITE high dose biotin is Myetin.  Click to Order. 
15.Creating your own health:  using diet and nutrition to help MS

My FAVORITE probiotic:  VisBiome.





3.  Alternative therapies that might interest you:

1.    Yoga
3.   Massage



4.  You may find these fact-checked articles and “MS connections” interesting:

1.    MS and Epstein Barr Virus
2.    MS and antidepressant
3.    MS and decision-making
4.    MS and Sunshine
5.     MS and stem cell treatment
6.     MS and brain stimulation
7.     MS and horseback riding
8.     MS and laughter therapy
9.     MS and sense of smell
10.  MS and Exercise



5.   Life-skills.  Tips  and articles.  

1.    Keep a health journal using Health Storylines APP
2.    Start a hand-written journal.  Handwriting is great therapy.  
3.    Build your support team.  Write down who is on your “Team”:  friends, family, doctors, pharmacist, nutritionist, massage therapist, yogi, God, whomever works for you. This list will grow and evolve during your MS.  
6.    Why me?  3steps to managing your angerwith MS.
7.    For better health, watch your words.  
8.    Can video games help MSsymptoms?  
9.    8 cooling and healing rituals for summer.
10.Get outside for 5 stress-busting exercises.  
11.Superhero saladrecipe for summer
12.3 recipesto help transition into spring. 





Contact me for any question!

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Guest Blog Post: Dr. Terry Wahls Recruiting for Diet Study


TWO MS DIET STUDIES are RECRUITING

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

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



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

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



  Dr. Terry Wahls  

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

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

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

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

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

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



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


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

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

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

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

We’d love to include you! 

Creating your own health: Using Diet & Nutrition to Treat MS

Probably one of my biggest factors in managing my MS symptoms is the use of diet and nutrition.  During my three years in the double-blind, T-cell study, back in 2001, my hopes were on nutrition and all things alternative.  I willingly went off all DMD in search of a cure for MS.  But then reality set in, and it was all engines forward in the battle of natural ways to fight the progression of this disease.

Sporting my flower peace wreath
There is a lot of incoming research on Diet and MS.  There are also some active clinical trials.

Click this out:  Here is my article on Diet as a treatment for multiple sclerosis.

Diet - or better yet, a nutritional protocol, is essential in my daily battle against MS.  If my daily intake has too much salt, too much caffeine, too much gluten, too many processed foods, then I will pay the price.  And while that price may not be paid that same day, trust you me that it will not forget and will rear its ugly head.  And, more often than not, all of the prices will want to be paid on the same day at the same time, wreaking complete havoc on your life.


Go for color when cooking and creating healthy menus 
Fresh lemon is key!  Use in water, tea, baths, etc.

 #refresh
Click here for my article on Diet as a treatment for multiple sclerosis.

Become friends with your body and find a new level of wellness.  

Welcome to living with multiple sclerosis.   As you know it often does not bode well for us MS patients.  Out diseases are random and progress willy nilly.  But there are modifiable risk factors that we can take into consideration to help us strive for the best life possible despite's our illness.  These risk factors include cigarette smoke, alcohol, nutrition, supplement intake, exercise, and other situations that we have control over.
~if need be - pee on it and walk away~

Cig smoking is bad.  Bottomline, cut it out.  Alcohol is considered OK in moderation.  Consult with your neurologist or medical expert.  Often people find that Vitamin D, B12 and Biotin can all be beneficial supplements.  In addition, the nrf2 activator, Protandim, is found to be great at fighting oxidative stress.

So, that brings us to Diet, or nutritional protocol.   Everyone is different so finding a protocol that works best for you is key.
Gluten free bread is an option.
Here it is paired with home-made soup and fresh salmon salad.
One person who is making a difference with diet and MS is Dr. Terry Wahls and her Wahl's Protocol. I had the great fortune of speaking with Dr. Wahls a few weeks ago for an article I was writing for Healthline.com - "Diet as a possible treatment for MS".   And wow!   So much great information going on with diet and MS.

The Wahl's Protocol is a modified paleolithic diet.  More about it click here. For those who do not know, Dr. Wahls has made diet a form of treatment for progressive MS.  Thank you Dr. Wahls!   I have been following and almost identical diet based on my own experience for over 15 years.  It is the number 1 "go to" when things are going bad with my MS.

And if you don't have fresh flowers, the fake ones are fun too!

First, I ask myself:  How is my diet?  Where am I going wrong?   And most of the time, this usually fixes it for m!   Like I say, everyone is different.  This is one reason I love the Wahl's Protocol - as it suggests elimination type diets to see what you personally are sensitive to and this is BIG!

Here is my article on Diet as a treatment for multiple sclerosis.

Here are some food common sensitivities:

Processed foods
Salt
Gluten
Red meat
Simple carbs
Sugar
Sodas
Diet anything / excitotoxins or NaStY for MS
Dairy....

FYI - I eat dairy.  Cheese.  I tried to take it out of my diet once and my boss told me to add it back as the rest of the staff was complaining about my horrid mood.  That was near 30 years ago and I haven't tried to remove it since~  I don't eat a lot of it but like it now and then.   I will willingly cut everything else out, before the cheese~

Lately I haven't been able to eat much meat.  My body, probably due to the warm summer months, is craving cooling salads and fresh fruit.  Unfortunately I like beer, especially in the summer months.  It's not the alcohol that bothers me but rather the carbs and gluten.  Talk about a weight gainer!  And then if I add bread....Oh dear save me.

Last winter I made the mistake of letting way too much beer, bread and gluten get into my diet.  Showing no restraint at all for about six months eventually led to a 15 pound weight gain, horrid dry skin and then the dreaded MS relapse!   Ugh.

My vertigo and vision got so bad that driving was out of the question...even just to a friends house.  Lethargic and inflamed my life consisted of laying in bed and "trying" to motivate.  Oh how I hate this feeling!   My skin was dry and eczema appeared all over.  Hair loss was abundant and my breath was so bad it even grossed me out.   What have I done?  So healthy last summer and then wowza, what a defeat brought on by my own weaknesses.

Time to make a change!

Feeling the summer spirit, light and fresh!
Nothing huge at first, just cut the carbs back down to no more than 10% of diet or so.  Eliminated processed foods again and removed gluten for the most part.  A little now and then does not bother me.  But a six pack of beer and loaf of bread is not considered moderation.   That's OK, the change feels good.

Back to juicing and healthy eating.  Beautiful summer produce combined with beans and grains cooked fresh are making the table.  Herbs from the garden and cheeses and meats from local farmers inspire this cook to create.


Some of recipes for your enjoyment:

Anti-inflammatory Rice Pudding

Obsessive Gaspacho 

Juice Recipes

Chia Pudding


Words of Advice:

Try different diets.  Work with nutritionists who understand MS and the different trending diets.  This is your health - it is your body.  Do not try whack-doodle eating schemes.  Try stuff that has worked for others, the key word being "try".  Give yourself a chance with different foods and see what you might be sensitive to.  Everyone is different!  

Add color and energy throughout your house with fresh flowers.
Here is my article on Diet as a treatment for multiple sclerosis.

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Epic vacation, lost vitamins, fighting a relapse.

Ack.  

Where is my pill box?  

This trip was flawless until now. Everything organized and flowing like a dream.   

Until midway into the last week when my vitamins were nowhere to be found.  Oh crud.  My Myetin was in this box.  Not to mention my Grandmother’s diamond ring. But in reality it was the Myetin I was most concerned about.  

This means five days without my high dose biotin, Myetin  Oops.  Not a good thing when venturing into 100F heat, adventures and time with your boyfriend.  Not good at all.  


The heat hit hard but my MS stayed at bay.  

Fun was had by all.  Mid-State Fair, Dwight Yoakam and great friends.  One couldn’t ask for more.  Except to find their Myetin.  


Energy flows where attention goes.  And I do not have energy to waste.  Putting my lost vitamins aside, we had a beautiful drive to the Central California Coastal town of Harmony.  I’ve been visiting this town since 1985 and the charm never fades.  


After some pottery purchases and selfies with the Cow parade, we ventured on up the road to the unbelievable Hearst Castle in San Simeon.  It’s been years since riding the visitor’s bus up the hill.  And, well, let’s just say my MS had the better of me.  Dizzy, fear of heights, it took everything I had to relax and meditate my way up the historical path.  


These frantic, nervous feelings are new to me.  Prior to MS, my weekends consisted of rock climbing, white water kayaking, racing mountain bikes, and back country skiing in the Cascades of Oregon.   Now I am afraid of a bus ride. 


Then, we arrived at top, and the sun came out.  Not too bad at first and fortunately not a scorcher this day.  But the rooms, those grand rooms of William Randolph Hearst, they got a little warm.  


A once avid adventurer, this girl with MS is limited in many ways unnoticeable to the naked eye. Fatigue, pain, balance issues, spasticity, are just a few to having a nursing, loving caregiver such as Tim, has made all the difference in the world.  My parents have been wonderful caretakers, but traveling with Tim does have its benefits! 

As dizziness rolled over me and the heat related MS hug crept its creepy hands around me, Tim grabbed a chair, a fan and sat me down.  I don’t look sick.  People stared, but only for a bit.   

Do people with invisible illnesses need to wear a sign? 

Often I feel the need to carry my handicap placard with me, hanging it around my neck.  Or to wear some sign that says, “I have MS and might trip and fall on you.”  

Frustrating to be in this position, with an invisible disability, but it is a good reminder to look at other people the way I want to be viewed, with kindness and gratitude in my heart.  To see without judgement.  

Almost ten years of my life were spent in this beautiful Central Coast of California.  I yearn to return to the countryside with Tim.  Have a garden, animals, couple of horses.  But that’s another story.  




A bit of Life before MS

A former horse trainer and ranch hand, I was fortunate to have worked several of the Hearst Ranches.  There were broodmares and foals in Paso Robles at Phoebe Hearst’s Circle 6 Ranch.  This ranch also housed a couple of international vaulting teams and the USET two-up carriage horse team.  This was all fascinating and fun work while studying Agribusiness and marketing at nearby California Polytechnic State University, San Luis Obispo.  

In addition, my ranch work took me to the Estrella Ranch where I exercised cutting horses, rode turn back, worked cattle and witnessed a variety of wildlife while loping across George Hearst’s 17,000 acres.  Also, The Jack Ranch out in Cholame was a beautiful, historical setting to work cattle and hunt wild boar.  Thank you Hearsts and Hearst Corporation for amazing memories!  



Distracted from my lost vitamins, we continued down the Pacific Coast Highway to the beautiful Cliffs Resort in Pismo Beach.  Thank you, Tim, for this wonderful gift and surprise!   



Still no Myetin 

My attitude was all positive but symptoms started to rear their ugly heads.  



First, my vision started to wane.  Try as I might, but it was getting hard to focus.  Fortunately for me, all I had to look at was this incredible view of the beach. This is why my hands are not on the steering wheel.  When it goes, it goes!  


Next, the weeble wobbles.  And, we do fall over, unless there is a cane, chair, or a loving caregiver, like Tim, nearby.  Blessed to have the latter, it was easy to lean on him, both physically and emotionally.  Because let’s admit it, having times like this get us down whether we like it or not.  

The pill box is nowhere.  It must be somewhere in the trailer back in Templeton.  I cant buy my Myetin  at a store.  Hmmmm.  Definitely next time I travel, will pack a backup supply, or two.  Because I really don’t like this feeling and I want my vitamins!   

Tim and I had an amazing adventure.  We tootled on home down Hwy 1, the Pacific Ocean to our right, the burned hills of Montecito to the east.   

Life is good. Very good. And it will be even better when I get to my vitamins.   



Research has shown it’s also important to understand that taking high dose biotin may provide a false positive result on a thyroid test.  For a true thyroid result, research recommends abstaining from it for two weeks prior to the test.  

I shared the research with my doctors. And more importantly, shared my personal results.  


Pain, fatigue, cog fog has reduced to a point of non recognition. Work productivity and energy level are at an all time high.  

My life with MS is thriving at a level I’ve never expected or believed would happen.  

Thank you, Myetin, for creating a product that works for me.   

And thank you, me, for knowing how to research and fine quality interventions to help me and others with MS.    


Back on Myetin.  

My pill box was left in Templeton.  Grateful to know the diamond ring wasn’t lost.  And to know I actually did leave it somewhere and didn’t lose it. Whew.   




Back on Myetin and it feels oh so good!   

It tastes so good.  LOL, I can’t believe how much I actually like this dissolvable tab.  Talk about an easy vitamin to take.  

So, if you read my earlier blog post about Myetin, I call it my Scooby Snack.  Only after all my swallowable pills are taken may I partake in my tasty Myetin.  The things we do to stay on track.  

But even then I tend to rush through my tab.  That’s not the point!   The point is to let the tab take its own sweet time to dissolve under my tongue.  

The problem is, I have no patience.  Literally, none.  Especially for sweet tasting tabs of wellness.  






Take the MyMyetin Challenge!


So, I’ve created the MyMyetin Challenge.  

How long can you take to dissolve your Myetin?   

I’m at .... lets see, I better try one now so I can see what my record it.   Hold on for a sec.   



OK.  One minute!  sixty Seconds!  That is my record for dissolving My Myetin tablet.   

Can you pass the sixty second MyMyetin challenge? 

#MyMyetinChallenge #SixtySeconds #BeatThat #takeTHATms!


CLICK HERE TO PURCHASE MYETIN 

This blog post brought to you by Caroline Craven, Avior Nutritionals, and Myetin, your high dose biotin for MS.   Thank you all for your continued support of GWMS and our mission to say #takeTHATms!


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