M is for Mighty

What are those letters M. S. about?

Sometimes it Isn’t Black and White.

Anyone who has ever dealt with a chronic illness knows that choosing the right treatment path can be time, research, and prayer intensive. As stated in earlier posts, we have definitely had our ups and downs. Since June of 2013, Tecfidera has been a great medication for us. The side effects were quickly managed with diet and supplements, and we were able to celebrate NO relapses! Yay! Success! Right?
The tricky thing about success is that it is ill defined and has so many parameters. Tecfidera has been a great success for us on all fronts except one. It just happens to be the one that has the potential for a life threatening brain disease.

If you are familiar with the world of MS treatments, then you have probably heard of Progressive Multifocal Leukoencephalopathy, better known as PML. Fortunately, there have been only a handful of cases of PML for patients taking Tecfidera, and all have had some shared characteristics.  

One of the most important risk factors is widely believed to be a low lymphocytes count for an extended period of time. As with many things, the definition of “low” and “extended” seems to be a bit vague, fuzzy, and ill defined. We have however found that three different neurologists in two different states agree that we have successfully thrown the numbers that meet those ambiguous measures and can no longer be on Tecfidera. (ALC has been hanging out around 500 since May 2014. It dipped as low as 200 and hasn’t really cleared 600 since then). 

I hope the doc has a plan for gray…

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In the car!?

Let me start by saying that this move has consumed all of my time and it has been over a year since I have made time for writing (NOT because the adventures have ceased). In addition, this post has nothing to do with MS, but may bring a smile to your face.  😊

In The Car!?

Let me preface this story by telling you that my mom and I have a solid two days into organizing, shopping, buying, sorting, and planning for our giving tree project. I am exhausted and may have lost a little bit of perspective. Using that filter, please recognize, that I think this could still be considered a near death experience.

Today, coming home after two hours of planning, six hours of shopping, and another hour of sorting, we had just left my school and were heading back to town. I was in my car, and my parents were in their van somewhere behind me. I was driving down the 60, reflecting on the day, and trying to figure out what I still had left to do tonight. I felt a tickle a sensation on my hand, kind of like a fly walking around on it, gave it a good shake wiped it on my jeans to be sure there was no fly, and kept driving. I was pretty preoccupied. Not two minutes later, I saw a ginormous spider walking down the windshield. It was directly in my line of vision. I thought to myself, “that is really odd that it can hold on and walk that calmly driving at highway speeds.” Then you know how in movies when the person with amnesia all of a sudden gets their memory back and all of these flashes of memories and images of the moments come flying at them all at the same time? Yes, that happens. All in a big WOOSH I realized that I was not looking at the belly of said ginormous spider…. I was looking at its back….. and it was looking at ME! 

Rather that shutting my eyes, taking my hands off of the wheel and leaping from the moving vehicle into traffic (like any rational person would do) I held my breath (I am pretty sure the beast couldn’t see me if I want breathing) and talked myself through the process of “signal right. Okay, now pull over. Nope, not too far. If you bounce on the dirt and rocks, the deadly creature that wants to eat your face will come flying off the window at you and you will surely die. Okay, now put the car in park. Now GET THE HELL OUT!”

After I got that far, I was not entirely sure what to do. I had forgotten my cell phone at home, had no flashlight handy, and was doing the yucky spider dance on the side of the road in the dark in my new Santa Paws kitty Christmas sweater.  

Fortunately before doing anything hasty, I remembered that my most wonderful parents were somewhere behind me. Soon, the chariot carrying those angels pulled over (probably recognizing the Santa Paws sweater and wondering why it was dancing on the side of the highway). My mom hopped out and I immediately started saying “I need a flashlight. I don’t have my phone and I need to see.” (Which in hindsight makes absolutely no sense to someone just arriving on the scene of the spider attack.)  

As she trustingly handed me her cell phone and followed me toward my car, she asked me what was going on. I tried to explain the situation but as soon as it became clear that it was an arachnid incident she started backing away and shouting for my dad. I believe there was a bit of hysteria in her voice and I heard her repeating, “THAT car? The car I was just in. The car I have been in all day!?!?”

My mind was racing as I tried to locate the wayward spider in the dark on the side of the highway. “If I don’t find the spider what should I do? Calling 911 seems a bit extreme. Perhaps animal control? Maybe AAA? Maybe just abandon the car?”

At this point, my dad was on the driver’s side looking for the devious hitchhiker and I (still on the exterior of the vehicle) continued searching from the passenger side (as far as possible from the original sighting.)

I was completely unimpressed when out of nowhere the aforementioned beast materialized right in front of me, again inches from my face but at least this time I had a piece of glass protecting me from its deadly force!

I announced its presence. Even my dad (who reacts to NOTHING) said “Wow! That is a good sized spider!” 

My dad reached over from the driver’s seat with a handful of napkins, made a swipe at the perpetrator, and as the wad was hurtling toward my feet at a great rate of speed, he proclaimed, “I don’t think I killed it.”

WHAT!?

I am pretty sure I didn’t black out, but it gets a little fuzzy. I remember yelling from my mom, lots of traffic, a quick prayer that she didn’t hurl herself in front of a moving vehicle to escape the NOT DEAD arachnid, a blur that I think was my dad coming around to my side of the car and a napkin in my foot that I really didn’t want to move but really wanted OFF OF ME!

In slow motion, I picked up the napkin and there in the dirt and debris NOT on my foot but dangerously close was a maimed spider. My foot reflexively defended itself and did the only humane thing which was, of course, to put the poor creature out of its misery.

I then proceeded to the space between the two vehicles, resumed an encore of the yucky spider dance, thanked my parents for saving my life, and shuddered, itched, tickled, tingled… did I mention shudder? the rest of the way home. I will be sleeping with one eye open tonight, and I may need a new car….

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An MS Sobriety Test

As I mentioned in my last post, we recently moved. In an attempt to get to know our new town, we decided to try a local establishment for our weekly date night. Our GPS dutifully lead us to a quaint little bar and grill tucked away off the beaten path. 

We enjoyed our time there. We heard stories of the famous patrons who had found this little gem in their attempts to escape the hustle and bustle, learned of the history, and enjoyed a great burger. We paid our bill and headed out, trying to decide what we should do next.
I had sipped soda all night, so I gladly took the wheel, although my darling spouse had just one drink with dinner. (Always drink responsibly!)
As we pulled out onto the road, I noticed a police cruiser pull in behind me.
“Any idea what the speed limit is?” I implored. 
“Nope. Maybe 35 or 40?” Was the not so helpful reply.
I plodded along at what should be approximately the speed limit, if a little slow, carefully observing all traffic laws. The officer followed.
As we approached a four way stop, I diligently came to a complete stop, and even sat there for an extra second as we strained to read the street signs in the dark. I proceeded forward, and on came the flashing lights of the officer to our rear. 
Shaking my head, I put down my window and waited. 
“Do you know why I pulled you over?” He asked.
“I have no idea.” I replied, shaking my head.
“In this state, when there is a white line on the road, you must come to a complete stop prior to the white line. Now at this stop sign, there was no white line. That means you must come to a complete stop before the stop sign. The nose of your car was past the stop sign. May I see your license and registration please?”
I was a bit floored by his meticulous explanation, but nodded, and gave him the requested materials. Here is where it gets interesting. “Where are you coming from?” He asked. 
A simple enough question, right? Not when you are new to town, and NOT when MS hinders your ability to find and spit out the correct word at the correct time. 
” I..ah… the uh… Over there at that bar and grill, I forget what it is called…” I stuttered and stumbled. 
He gave me a wary look. “Was it any good?”
“They had good burgers.” (I may have slurred those words.
“Where are you headed now?” he asked.
I paused. We hadn’t really decided. Maybe go to a movie, or find a Redbox? “I….uh….we…uh…downtown.”
The officer kindly left at this point to run my info. He returned with yet another question. “I am going to ask you a question and I want you to be 100% honest with me. Have you had anything to drink tonight?” My heart sank.
“No sir. Nothing at all.” I honestly replied. 
I am going to need you to step out of the car if you don’t mind submitting to a sobriety test. I got out of the car and followed the officer. My heart raced as he shined his flashlight on me and had me follow the movements of his pen for far too long, praying he wouldn’t ask me to walk in a straight line. He asked if I had cataracts, glaucoma, and a slew of other things, but MS wasn’t in the list. Did I think to mention it? Of course not. In true MS form, it occurred to me to mention this nugget of information AFTER he had finished his tests and we were heading back to the car. 
With this new information, he nodded, as if it all finally made sense. 
Clearly, I was going to get pulled over no matter what I did. I am sure it was a routine sobriety check. It had not, however, ever occurred to me that I may not be able to pass while 100% sober! 
As we drove to our new home, discussing the ramifications, I said, “Well, next time I guess I had better ask to take a brelfthalitzer.”  
Yes. An unintentional MS word mutilation. 
Yes, we laughed uncontrollably the rest of the way home.

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A New Chapter

We are at 2 years since diagnosis and happy to report, doing well. Tecfidera is doing it’s job, and while old symptoms ebb and flow, we are happy to report no new flares!
We have recently made a major life change. We started out just looking for houses with fewer stairs. (Our home was what they call a “five level.” You pretty much can’t go anywhere without stairs!) Then, as we travelled around, visiting family, started taking a peek at available real estate.
The bitter cold of Idaho has been rough for muscle spasms and cramping, but oddly enough, we have discovered no major ill effects from heat (aside from the discomfort and torture EVERYONE experiences at 110 degrees). This, of course, is NOT true for all who have MS. Through our research and conversations with fellow MSers, some people with MS cannot seem to even function in the heat. 
We are fortunate to have found some relief from the winter spasms and have made a move. We are now living in sunny Arizona. We have only been here a few weeks, battling the summer heat, but so far, so good!!!! 

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Always hold on to the hope!

I want to start this post with a quick shout out to a family friend who was just diagnosed with MS today.  This journey can be stressful, terrifying, annoying, frustrating, and unpredictable; however, there IS joy, peace, acceptance, relief, learning, growing, camaraderie, and hope!  Always hold on to the hope!

When someone is new to this crazy world of MS, they have many questions, lots of advice, and oodles of choices to make.  It is hard to know where to start!  What medication? What supplements? What diet? What kind of exercise? Who do I listen to?  In this great information age, there is an overabundance of published research, articles, blogs, personal opinions, and advertisements from drug companies.  Some of it is great information, some is great only if you speak medical-ese, and some of it is crap!

Disclaimer:  I will pause here a moment to reiterate that I am NOT a doctor or expert of any kind.  The purpose of this blog is to share our personal journey and what we have discovered along the way. 

Having a family friend receive this diagnosis today triggered a barrage of questions from our eldest (now 18).  She has a new sense of wanting to understand the disease, what we have tried and why, and what has worked for us.  Although it is hard to accept that your kids don’t stay little, It is pretty cool to see them learn and grow, and take on the challenges of the world with an inquisitive spirit, grace, and determination.  It was, in fact, at her request that I am writing today.

Some of her questions:

Q: What medications have you tried? 

A: We started with Avonex.  It is a weekly injection. Some people have great results with this medication.  In fact, I don’t know if you are supposed to or not, but we noticed a decrease in symptoms pretty quickly.  The tricks to Avonex for us was drink LOTS of water for 24 hours PRIOR to the injection, take an NSAID prior to the injection, and take the injection before bed on a day that you don’t have to go to work in the morning.  The side effects were flu-like symptoms, some depression, and for us…. blisters. Which leads me to medication #2, Tecfidera. 

Tecfidera is medication is a pill that you take every 12 hours.   We have had to play quite a bit with the right cocktail to battle the side effects of abdominal discomfort and flushing, but have it all to a manageable level now with just a daily probiotic.  The occasional “sunburn from the inside” and ever-favorite “Tec farts” are all we have left.  We have not noticed and increase or decrease in symptoms after nearly a year on the drug.  Tecfidera is not designed to reduce symptoms, but instead is supposed to delay the relapse rate.  (If I remember correctly, by about 50% – but check that number before you consider it fact.)

Q: What other medications did you consider?

A: We really considered Tysabri, a once per month infusion, because of the significant reduction to the relapse rate (something more like 70%).  Unfortunately, with a JC+ outcome, we decided that the risk for PML was just too high.  We looked at Copaxone, a daily injection (cuts the relapse rate somewhere around 30%), and still a viable option, but ruled it out at the time.  With a considerable number of lesions on the spine as opposed to the brain, our neurologist advised a more aggressive treatment route and cautioned us that being injected at the skin level, many people can build an immunity.  We also heavily researched Gilenya, the first once daily pill (reduces the relapse rate by about 50%).  We have a personal connection with a patient currently on Gilenya and doing well, but for us, with some dysrhythmia issues, we were concerned about the possible cardiac effects.  The rumor mill is buzzing about a new drug (still in trials) that is showing great promise.  Based only on hearsay, the vast majority of the people in the trial are 5-7 years out WITHOUT relapse!  Always hold on to the hope!

Q: So what is that diet you guys are doing that is supposed to help MS?

A: Our own personal research on how MS works has lead us in the direction of the Paleo diet.  I say, “in the direction of” because we do NOT follow it very well.  We have taken the parts of it we feel like we can live by and then have made some “healthier than before” choices. (sad, but true)  With the Paleo Diet (whole books have been published on the topic and the diet itself is likely ‘owned’ by someone, so I will just give you the highlights) you pretty much stick to lean meats (wild game if you can), veggies and fruit, and seeds and nuts.  The reason we gravitated toward this one is because it tends to be Omega 3 rich with little Omega 6.  Based on our own personal research, we decided to include as much Omega 3 as possible (spiking everything from scrambled eggs, to spaghetti with chia and flax) and get rid of as many inflammatory foods as possible.  Aside from the benefits for MS, this has been great for our joint inflammation and allergies as well!

Q: Haven’t you guys done a lot with vitamins too?

A: Yes, we do a lot with supplements.  Based on, yep you guessed it, our own personal research, we have settled into a supplement regimen that seems to be working for us.  One of the first things we did after diagnosis was have a Vitamin D test.  There is some research out there that indicates a possible correlation between MS and vitamin D deficiencies.  The test came back, and sure enough, deficient.  It helped guide us as to how much to supplement the vitamin D. We do between 5,000IU and 20,000IU depending on the amount of sunshine.  In addition, we do mega doses of Omega 3 via fish oil.  The goal is 1 gram per day.  That means 1,000mg of Omega 3 (not 1,000 mg of fish oil…it will be significantly more fish oil).  Part of this can be cod liver oil, but not all of it because of the additional things cod liver oil supplies.  We also take a Turmeric tablet daily (anti-inflammatory support), 300mg of Co-Q 10, and 200mcg of Selenium.  Toss in a multivitamin and the probiotic for the Tec side effects and it is a tasty treat! (I highly recommend you do not try this on an empty stomach!

Q: When does “squirrel brain” (see previous post) start?

(In our home we are very kind and supportive to the MS patient with “squirrel brain.”  If someone scrambles their words or says something unintended we all chime in with “knuckles!” as a show of solidarity.  Hey – you gotta laugh!) 

A: This is where I explained how MS affects everyone differently depending on the location, size, and number of lesions.  I re-explained the active lesion and inflammation versus the scar.  Evidently I explain that one too often because I was met with a, “yeah, I remember the electrical cord demonstration at the dinner table.”  (I still think it was an awesome demonstration!)

I am sure this is WAY more information than you bargained for, and if you didn’t fall asleep four lines in, thank you for hanging in there with me.  I know everyone’s MS experience is different, but I think we have a great deal we can learn from each other.  I know that I personally have hundreds of hours invested in gathering information and researching on my own, and I know there are many out there just like me.   Comment, email, or message me.  I would love to dialogue, swap stories, and share ideas. 

If you would like to contribute to this blog, please let me know.  Also, if you are a fact checker and find errors, please let me know!

Until then, always hold on to the hope!

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Milestones

February marks a couple of major milestones in our MS Journey. First, it marks one full year since the puzzle pieces fell into place and we started to suspect something more than stress and age related aches and pains. Second, it marks a full six months on the little blue pill… oh wait… not that one… the one that sounds like a baby rattle on its way down your gullet. 🙂

Frustrations:
1. I still can never seem to tell if the feet are cold or just numb.

2. Squirrel brain abounds!

3. Pens, keys, and other small objects are dropped with such regularity it is the expectation not the exception.

4. Cold = cramping… sucks!

Blessings:
1. I consider us extremely fortunate to have been able to put the pieces together so early in the disease progression.

2. I also consider us fortunate to have a neurologist who is up on the latest research and willing to take risks.

3. The timing was impeccable. Tecfidera was officially released on the market in March of 2013. We knew we were looking at possible MS in February of 2013 and got the official diagnosis in April of 2013.

4. After some emphatically unpleasant experiences with Avonex, we were able to start on Tecfidera in July – just 3 months after diagnosis and just 4 months after its release.

5. An MRI at the end of December showed no new flares.

Do you ever feel blissfully blessed?

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Catching up…

9/5/13

August was a crazy busy month for us at work and at home, so the blog has been neglected.

We are 5 weeks and 4 days in with Tecfidera – take two.  The probiotics are working great!  We got really lucky and hit the nail on the head on our first try.  (Lactobacillus Plantarum) In fact, the flushing has even subsided!

The down side of Tecfidera is that you really have no idea if it is working or not.  It’s job is to reduce the frequency of the flares.  It doesn’t take away symptoms, and it doesn’t prevent flares completely. I guess we just go on faith that the researchers did their job in the double blind studies.

On a Tecfidera forum that we frequent there have been reports of people noticing tingling in their feet.  It is hard to know what is just the MS and what could be the Tec.  We have been battling the foot tingle since this whole adventure started back in February.  It is always there to some degree, but varies in intensity like a rolling wave. 

Similarly, people talk often about “squirrel brain” which seems to accompany MS.  Have you seen the movie “Up?”  In the movie, there is a dog named Doug who continually distracts and interrupts himself .  In particular, he loves balls and squirrels.  If he sees a squirrel, he will drop everything to go chase it.  There seems to be less of a pattern to the MS mind.  All of the great intellect will be rolling right along and then, “SQUIRREL!” …. What? Exactly! Who’s on first?!?!?

Conversations around our house are interesting and often entertaining.  I am not sure if we have ever laughed so hard as with some of these “squirrel talks” by the end of which neither of us remembers the point or original topic!  Laughter is wonderful medicine and a great stress reliever. 

My challenge to you:  Every day, find ten things for which you are thankful.  If you are not thankful for the little things, then you have nothing.

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Sharing Stories

Sharing Stories

This is a forum for MS collaboration. Kinda cool!

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New Treatment?

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I love the innovative thinking!

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Defeating Digestive Discomfort

Three doses down and no digestive discomfort! We are trying not to get our hopes up, but this is REALLY exciting!!!!!

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