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!