M is for Mighty

What are those letters M. S. about?

Seeing Spots!?!?

Seriously!?!? We stopped Avonex, took nothing for a week, started Tecfidera and BAM! 20+ new spots!  Where are they coming from?

We decided to continue with Tecfidera since they have been around longer than it has and they don’t seem to be getting worse.  (We are still only 3 days in though). We have stopped all supplements, but that hasn’t seemed to help either. Puzzling!

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Flaunting Freedom From February’s Flare!

Just a tich of tingling in the toes and other than that we are FREE!  Yay!  I didn’t really want to “flaunt” it, but it is the only word I could think of to support the alliteration.  🙂

 

This flare, by far the worst, is the one that led to diagnosis just 6 weeks ago.  It started on President’s day, February 17th.  It was a BEAUTIFUL day (by Idaho standards) and a bike ride with the kids was in order.  The eight mile trek was chilly but invigorating!  The only problem? Cold feet.  Not like the, “I am not sure I want to get married” kind.  More like the “I can’t feel my toes, especially on the left foot” kind.  Nothing some nice warm socks can’t fix. Right?  Wrong.

Over the course of the next couple of days, the numbness and tingling spread up the left leg.  Within four days it had overtaken the knee, and by ten days it had reached the abdomen, never crossing midline.  By the beginning of March it involved the chest on the left side, and eventually everything, armpit to toes, was affected.  As time progressed the altered sensation varied some but never subsided:  A “heavy feeling” in the left leg, “ice cubes” between the toes, “cramping” around the knee, quad, and hamstring, “burning” in the foot, “squeezing like a band” above the knee, “pins and needles” in the left glute, and feels like a “snuggie” or a “wedgie” that won’t go away. Tired, frustrated, and preoccupied with these bizarre symptoms we finally did blood work (ruling out glucose and B12) and then, when all else had been ruled out, succumbed to the world of neurology.

No offense – but NOBODY wants to have to see a neurologist!

April 29th was the diagnosis and our official MS journey began.

Looking back there were so many signs and symptoms that we easily explained away with fatigue, injuries, stress, etc.  For example, 6 years ago some numbness/tingling on left side of face, 5 years ago a bout of “sciatica” during a road trip, a year ago some numbness/tingling in the fingers of the left hand following a car accident, 6 months ago persistent low back pain attributed to possibly the car accident, work, and travel, and last winter “tendonitis” in left elbow, constantly dropping things, and extreme fatigue.  Now, however, it is almost comical to see the trend and wonder what else we missed!

Now that we know what it is, and thankfully while it is still relapsing/remitting, we have a great neuro and hopefully great meds to prevent or at least slow down future flares. I shall end by saying farewell.

FAREWELL FEBRUARY FLARE!  You will NOT be missed!

(I love alliteration!) 🙂

 

 

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Side Effects and Symbiosis

We are now four doses in with Tecfidera! (120mg morning and night)

An odd fact about this little pill: when you shake it, it rattles.  Seriously!  There are little capsules inside and they even rattle going down!  Kinda odd and cool all at the same time!

For the first dose we followed everyone’s advice: hearty meal, Benadryl, aspirin, and cold water.  It was an evening dose and went off without a hitch… well…. almost.  The one who took Tecfidera slept like a baby while the other woke repeatedly through the night checking for symptoms and side effects!

For the second dose, since the first went so well, we thought we should try it without the aspirin and Benadryl. Ta-da! A slight bout of nausea about 30 minutes in, but short lived.  We have this thing licked!

Third dose – spoke too soon!  Oh, not for the one taking the meds though.  No side effects there. Just sympathy side effects for the other.  Nausea all evening!

The fourth dose was awkward.  We waited for our meal at IHOP for like an hour, we were late with the meds, took it on an empty stomach, and washed it down with Pepsi.  We were sure we were in trouble on THAT one!  Nope!  Just dandy!  Again, the one who is taking the meds is having a happy-go-lucky day, while the other is experiencing fatigue and nausea.  How is that for a symbiotic relationship!?!  At least neither of us is having hot flashes…yet.

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Here we go!

It is official, we are approved to start Tecfidera. More importantly, we are approved for financial assistance for Tecfidera.  Did you know that (like most MS drugs) it costs about a bazillion dollars!?!?

I am kind of excited, but of course, nervous too. The cool thing about Tecfidera is no more needles! It is an oral medication that you take twice each day.  The unnerving part is that it is just so new.

Tecfidera is related to a drug used for quite some time Germany to treat psoriasis, but the FDA approval for its use in this country for MS was just March 27, 2013.  The clinical trials went well and the side effects seem tolerable.  Every MS drug has side effects, it is just a matter of which side effects you can live with.  Just for fun, I thought we should try the one that makes your pee turn blue!

We recently researched some of the more common side effects and found helpful hints from actual users.  They used phrases like:

“…your head is on fire and expelling embarrassing acid fart bombs”

“I look a little odd red like a lobster and mildly pruritic. All in all no problems.”

The advice of actual users (often more valued than the actual docs) is to take an aspirin and a Benadryl, eat a good meal, and take it with something cold.  As always, if you experience difficulty with any of the A airway B breathing C circulation then a trip to the ER is in order.

Prepare the worst; hope for the best!

(some great reader friendly info about Tecfidera)

http://www.wheelchairkamikaze.com/2013_05_01_archive.html

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A is for Avonex, B is for Blister!

The titration kit arrived. We had our injection training. The first shot (1/4 dose) left a pretty decent bruise and a hangover headache, but was otherwise uneventful.  The second shot (1/2 dose) only left the hangover headache behind. At this point, we are thinking we are home free!  Avonex without the flu-like symptoms, what a gift! The third shot (3/4 dose) left the traditional hangover headache and then, about 3 days later, red spots randomly scattered across the body.  ?????  What is THAT about?

We read all of the side effect warnings, allergy warnings, possible viral or bacterial infections… nothing.  The next day, more spots and these had tiny little blisters or pustules all over them.  We were thinking maybe shingles, but they didn’t follow any nerve root or pattern.  At a loss, we forked over the money for an urgent care visit and promptly stumped the docs there.  They did some research of their own and arrived at the same conclusion we had… no idea what it is!  They took our money, gave us the standard prescription for an antibiotic and sent us on our way.

Fortunately, the neurologist (who had been out of town for a week) returned and agreed to take a look.  He didn’t know for sure, but suspected it was an adverse reaction to the Avonex.  He strongly advised NOT taking the full dose shot that was scheduled for that evening, fearing an even more severe reaction.

Back to anger. Darn grief cycle!

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“Heart Smart” or “Brain Smart?”

Everyone has heard about cooking “Heart Smart” but what about “Brain Smart?” Here are some tricks to help you navigate the Omega 6 infested kitchen you are probably used to.

First, know what you are looking for.  I have been shocked to find that many food products will label and advertise that they contain Omega 3 but never tell you in what quantity!  (They also neglect to mention their Omega 6 to Omega 3 ratio.)  I do not know what the precise recommendation is for that ratio (those darn “experts” never can seem to agree!) but I always aim to make the Omega 3 as high as possible and the Omega 6 as low as possible.

Second, cook at low temperatures. I am not a scientist, so if you want a scientifically accurate explanation as to why, you will need to google a medical journal or something.  I will tell you how it looks in my head: You know those little pop beads that toddlers play with to learn hand-eye coordination and dexterity?  Well in my head Omega 3 chains are like one big long chain of those pop beads right after you get a new package.  When you play too rough with them then they come apart.  Then you have those free radical beads all over the #@*$ house and they are harmful.  If you don’t believe me, just try stepping on one!  So if the Omega 3 chains are over processed, become to hot, or are otherwise played with too hard, then they become damaged and break making harmful free radicles.  Besides, when you kill off the fragile Omega 3, Omega 6 prevails.  It is sturdier and tougher but it is inflammatory and the exact opposite of what you want if you are a knight slaying the dragon of MS!  The point? Oh…be gentle with your Omega 3.  Keep it as unprocessed as possible and cook at low temperatures.

Third, get as much bang for your buck as you can!  Wild salmon has about 3grams of Omega 3 while farm raised tends to be more like 2grams.  Albacore or Blue Fin tuna has about 3 times the Omega 3 as “light” tuna.  Add flax meal and chia seed to anything you can hide it in (it doesn’t change the flavor much).

Here are some ideas to get you started:

I recently made a batch of Omega 3 power breakfast burritos (they freeze and reheat nicely). I started with 5 whole grain tortillas (each with a little bit of skim mozzarella cheese on them).  I then scrambled 10 Omega 3 enriched eggs, 1/4 cup flax meal, 1/4 cup Omega 3 enriched milk, 3 TBS chia seed, 1/4 c chopped onions, 1/2 can diced green chiles, and seasoned it with garlic, salt, and pepper. I then assembled them, wrapped them individually in plastic wrap, and put them in a Ziploc bag. Each burrito contained about 3grams of Omega 3!

Another powerful recipe, also nearing the 3 grams per serving mark, is an MS friendly granola. Mix together 2 oz of pumpkin seeds, 2 oz of sesame seeds, 1/2 c sliced almonds, 1/2 c chia seed, 3/4 c flax meal, 41/2 c oats, 1/3 c honey, 1/3c Agave nectar, and 3-4TBS of Omega 3 enriched cooking oil.  (We added some sunflower seeds too.  They are kind of Omega neutral and we like them!)  Spread the mixture on a baking sheet and bake at 300 for about 25 minutes (stir part way through).  Let it cool and then I like to stir in some dried or dehydrated fruit.  Raspberries and Blueberries are great sources of antioxidants!

NO RED MEAT!?!?  Seriously!?!?  and what are you supposed to eat instead?  WILD GAME!?!?!? Gag!!!  I am seriously NOT a fan. I have, however, developed four recipes for wild game that I can stand to cook, smell, and yes…even eat.  (The kids even like them!)

1. Wild Game Roast:  coat crock pot with olive oil.  Put in a 2-3 lb roast. Cover with onion powder, minced garlic, and apple slices.  Make gravy with beef bullion and 1c water.  Cook on low until tender.

2. Wild Game Roll-Ups:  Marinate meat in a low fat Italian dressing and then cut into 6″ strips.  Layer 1 strip of turkey bacon, 1 strip of meat, a spoonful of fat free cream cheese, and a pickled jalapeño slice.  Roll, skewer, and grill over low heat (10 minutes on each side).  *By the way, for grilling, I LOVE the new pellet smoker grill!*

3. Meat and Potatoes (Or rice, or quinoa, or bulgur….) Start with approximately 3 lbs of meat in the crockpot.  Add soy sauce, Worcestershire sauce, yellow or Dijon mustard (good source of turmeric!) a can of cream of something soup (“healthy choice”), a can of water, onion, garlic, and pepper.  Cook on low ALL DAY so it is nice and tender. Serve over mashed potatoes, rice, or quinoa, or some other starchy something.

4. BBQ – 2-3 lbs of meat in the crockpot (are you noticing a theme?) Add chopped turkey bacon, BBQ sauce, liquid smoke, onion soup mix, and water.  Again, you will want to cook it on low for several hours until it is tender. This one is great served on whole grain buns with a side of baked beans!

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Hop, Hop, Crash!

A few weeks after diagnosis I kind of hit a slump (I am thinking it was probably the “depression stage” in grief cycle speak).  I wasn’t really angry or sad, just blah.  As I was getting ready for work one morning, silently pondering the mysteries of life, I hear my husband holler, “wow! That was almost a hop, hop, crash!” Puzzled, I went into the bedroom where he explained to me that he was putting on his pants, caught his toe, lost his balance, and almost went crashing down. (Apparently we ALL need more sleep).  We mused about the close call and I resumed getting ready.  Suddenly I burst out laughing. I don’t mean just a little laughing, I mean gut busting, tears streaming down the face, gonna pee my pants kind of laughing.  You can imagine my husband’s surprise with this unprovoked outburst of frivolity.

“What’s so funny?” he asked, chuckling slightly at the joke he had yet to hear.

“Hop, hop, crash.” I managed to squeak out through my laughter.

To this he frowned. Not like an angry frown, but a confused, what kind of alien has possessed my wife kind of frown. “It wasn’t THAT funny.” he said.

I couldn’t speak.  I shook my head, helpless to explain.  After what seemed like an eternity I explained that in his stumble, I stumbled upon my new metaphor for life.  Life throws something in your path, you catch your toe and begin to fall, your body fights to protect itself with a hop in hopes to regain balance, you think you have it back under control and then start to waver again, another hop, a sigh of relief, and then CRASH! you hit face first into what life has thrown your way.

There will always be something on which you catch your toe.  You may be able to right yourself after the first hop, or maybe the second, but sometimes you crash.  I think the real secret for a full and meaningful life lies in the crash.  That is where you commune with God.  That is where your interdependence with others forges family bonds and friendships with a strength like no other. Yes, it is all about what you do after the crash.

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G is for Grief

The grief cycle is such an interesting thing.  You would think you would just move through step by step, but no…it is much more like the old washing machines with the agitator.  You swish about back and forth, completely off kilter, and then BAM!  The spin cycle hits and you just want to puke!

It was about two weeks after the diagnosis when I found myself fully immersed in the washing machine process. I would hang out at denial for a while, especially when I was talking to others about how we had everything under control.  I would swish on over to anger for a while about how it just wasn’t fair.  I would drain into sadness as I pondered all of the hopes and dreams for our future.  Refill with denial, swish to acceptance, and on it goes.  The only stage I haven’t really hit yet is bargaining…maybe that is in the dryer.

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The A, B, C Omega 3’s

Reliv Now with lunaRich

Reliv Now with lunaRich (Photo credit: Reliv International)

It is a regular alphabet soup when you start researching nutrition and supplementation for MS!  By no stretch of the imagination do I have it all figured out, but there are definitely some strong trends: consume as much Omega 3 as is humanly possible and eliminate as much saturated fat as humanly possible.  After that it starts to get more convoluted with every “expert” proclaiming their “miracles.”

We chose to believe an “expert” who recommends 9 grams of fish oil per day.  The reason we listened to him is because many sources I found say you should have 3 grams of Omega 3 each day.  Remember, only about 1/3 of the fish oil is actually Omega 3!

Another “expert” we chose to heed the advice of talks about co-factors. He recommends the following per 3 grams of Omega 3:  400 mcg B12, 500mg C, 50mg riboflavin (B2), 50mg B6, 800mcg folic acid (B9), 5mg CoQ10, 5mg Alpha Lipoic Acid, 100mcg Selenium, 150mg Magnesium.  Luckily we happened upon most of these in one place.  It is a cool supplement shake called Reliv.  It is expensive and tastes blechy, but many people with MS swear by it!

Many in the field are finding that there is a correlation between those who are vitamin D deficient and those who have MS. Another interesting link is the higher incidence of MS in the northern climates.  Well, here we are in Idaho, very vitamin D deficient, and Wham! Hello MS. So, added to the fishy cocktail, yep, you guessed it… Vitamin D!  We are supplementing with about 10,000Iu daily.  From what I have read, you have to be hitting 50,000-60,000 before you reach toxic levels.  I hope that we are good at 10,000!

Finally, Turmeric.  If you google it, I am pretty sure you can find a website saying it will cure just about anything!  The fact that it is considered to be both neuroprotective and anti-inflammatory made it a no brainer for us.

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JC What?

There are WAY too many acronyms in the MS world!  One of the tests we had to run was to determine whether we were JC positive or JC negative.  The plan was to start on Avonex and then move to Tysabri for about a year.  All we needed was for the test to come back JC negative.  Nope. JC positive.  Okay…no big deal… we will just stay on Avonex.

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