Keeping You Posted

Hey ya’ll, how have you been?  I’m gonna jump right in because I have much I want to fill you in on, including the following:

  • My multiple sclerosis and medication
  • Maybe a side trail about my personal life and how awkward I am
  • Or I may just jump into this: Two hikes (which I’m going to ruin the climactic moment: There was camping!)

Let’s get started with my MS and medication.  I left off on my last Surprises post telling you about how I was experiencing a numbness slash paralysis-of-sorts in my arm.  Here’s the quick and dirty as-of-today update: Most days, my left arm is no longer numb and feels as it should; however, my left thumb and often times my left pointer finger is lacking sensation entirely.  The odd part is that even when my fingers are alright, there can suddenly be a strong numbness and pain that shoots from my fingers, up my arm, to my shoulder.  This is odd to me because with numbness, I shouldn’t be able to feel pain, but it is as if I have pounded the area with a hammer — as hard as I could until that throbbing sensation is the only thing I feel.

That sounds bad but again, it comes and goes and isn’t there 100% of the time so I am simply happy when I don’t feel it (like now . . . yay!  Let’s celebrate!).

What else did my last post mention?  Oh!  My new neurologist.  I really liked him . . . in fact, so much so that I requested he be my permanent neurologist.  He was thorough, working to determine a large amount of my history since he had never seen me before.  Also, he was straight-forth, which meant he did not waste my time . . . literally as in the fact that I waited maybe five minutes in the waiting room and five minutes in the patient room and also in the sense that we didn’t get off track talking — It was focused on why I was there and what I needed to do to improve and move forward in the future; I appreciated that.

Importantly, we talked about a few things: He said because I have had many MS episodes within the past few years and recently, I have “clinically active MS” or basically my MS is workin’ up a storm in my body.  Because of this and the need to go on medication soon, he wanted me to have yet another MRI.  That way we can compare the results to my past MRI and to a future one when I will be on medicine (to ensure the medicine is helping).  Further, he wanted me to up my Vitamin D intake to 2,000 units.  Also, he supported my decision to get IV steroid treatments due to my “arm attack.”  Lastly, he agreed Copaxone was not right for me and recommended a switch to one of four non-injection-based medicines (which I am going to detail what I learned in hopes of helping someone else):

  • Aubagio
    • A once-a-day pill that has been around for four years.
    • About 100,000 people on it but more are switching to it.
    • Before you take the pill, you need to have blood work done.  Also, this is the strange part), promise to take birth control because the medicine stays in your body for eight months to two years (though I have been told by nurses it is three weeks to three months) and is not friendly to your body if you become pregnant.  (Side note: Birth control should be taken for anyone who is sexually active and taking MS medicine because all can harm the unborn child.)
    • Main side-effects are tiny compared to others: Mild hair thinning (which resolves in three months), headaches, nausea, stomach problems, and a serious skin reaction that can lead to death.
    • Once you take the medicine, you need to get liver labs done every month for the first six months.
  • Gilenya
    • A once-a-day pill that has been around for six years.
    • There are about 100,000 people on it.
    • It stays in your body for a month.  Before you take it, you need to have an eye exam, get an EKG, and have blood work done.  Then when you take it, you need to be observed at an out-of-patient center for six hours so that the nurses can monitor your blood pressure and check your blood cell count every hour.  (Side note: If you skip the medicine, you have to repeat this entire being-monitored process.)
    • Main side-effects are long and expanded here from lowered heart rate (the reason why you have to be observed when taking the first pill), irregular heartbeat, vision problems (like optic neuritis), dizziness, shortness of breath, liver problems, swelling, nausea, stomach pain, whites of eyes could turn yellow, flu . . . much much more . . . and PML (stands for Progressive Multifocal Leukoencephalopathy), which is scary because it is a severe brain infection that leads to death (there have been about six PML cases with this medicine).
    • After you start the meds, you need to have an eye exam every three months.
  • Tecfidera
    • A twice-a-day pill that has been around for three years.
    • There are 200,000 people on it, though many are switching to another form of treatment/medicine (it is unclear why).
    • This stays in your body for a month, and all you have to do before taking it is have blood work done.
    • Main side-effects are PML (at least four cases here), allergic reactions, difficulty breathing, decreased white blood cell count, nausea, stomach problems (which can decrease over time), flushing (which can decrease if you take it with food).
    • Once you take the medicine, blood work needs to be done for the first six months to year.
  • Tysabri
    • This is an IV injection-based medicine.
    • The main side-effect that stood out to me was death if you have the JC virus (a virus in the brain).  The scarier part is that you can test negative for this virus and actually be positive and you can suddenly change from positive to negative.  I ruled this one out immediately.

Long story short, while I tried to make a decision on my medicine, I knocked out blood work so that I could start whichever pill as soon as possible.  I was also able to get IV steroid treatments relatively quickly.

I’ve said it before, I’ll say it again: I know it seems childish to essentially have suckers at the doctor, but the steroids cause such a strong taste of metal that it is difficult to even swallow.

I was also able to get my MRI soon, which by the way is another reason I love my new neurologist — He prescribed some ammmazingly strong anti-anxiety pills due to my claustrophobia.  Andy, you’ll remember him from Hike Three: Virginia’s Emerald Pond post, was kind enough to offer to drive me since the pills would make me drowsy, but bless it!  If I had known how crazy I would have acted, I may have begged someone else to go . . .

First, these meds made me actually happy to have an MRI done!  In fact, from the moment I popped the second pill to thirty-six hours later (no joke), I um, kinda sorta . . . okay, completely . . . don’t remember anything.  Sooo I (at least) think I didn’t cry . . . and I think I may have even slept while the MRI happened.  But I do know I slept before the MRI because the last thing I can recall is feeling heavy-eyelids-exhausted in the waiting room.  Then (and this is where it gets blurry and goes downhill) in the waiting room, I apparently fell into such a deep sleep on Andy’s shoulder (bless his heart) that both he and Nurse Joe had a large amount of trouble waking me . . . so much so that Joe was convinced I needed to be rolled back in a wheelchair to get my MRI.  Once there, I apparently excited-screamed at Joe, asking, “What are two things that would make your day?!” (because that is the most normal and natural question you would ask a stranger) . . . to which he said chicken noodle soup and cuddling with his girlfriend . . . and that caused me to announce too loudly, “Joooe!  I CANNOT make your day because I CANNOT help you with EITHERRR!”  While I don’t remember this, I do recall not being able to help Joe with something very very important.

Andy also filled me in on the fact that I apparently drunkenly-acted and forcefully dictated Bojangles directly after my MRI . . . and yelled at Siri when she didn’t provide me with directions or understand my slurred speech.  I mean, yeah, this sounds like me because Siri and I don’t get along; plus, he hasn’t had Bojangles or sweet tea before (I know, guys, I know — Me spending time with him is ludicrous).  Anyway, I’m told we get there and I literally steal . . . and finish his sweet tea because one, I supposedly messed up my order and got a small drink and two, I didn’t remember I could get a free refill (being that Andy is from a country that doesn’t have refills, he didn’t know . . . who chooses to live in a country without free refills?!?!).  Side note: Andy, I guess, hated sweet tea because I later found that I tweeted about his reaction to it . . .
and I later saw that I sent too many text messages to my mother about the event . . .
img_4730img_4731img_4732. . . and when I found all of these messages, I thought them highly amusing.  It was as if I didn’t know how the story ended, was on the edge of my seat, and had my own hired comedian to tell the tale.
Oh, I also forgot — When we returned, he told me I pounded my fist on neighbors’ apartment doors then, giggling, ran away (because that’s something really awesome to do).

. . . So yeah.  Those meds — Thumbs up, perrrfect . . .

Alright.  Hopefully that made you laugh in the middle of my story because sometimes you seem to be sad for me because I have MS and there’s no reason to be.  I’m okay . . . okay?  Therefore, back to my story: My MRI results showed two new lesions, which true — is not good.

Also, another update: Once my brain because less drugged, I ended up choosing Aubagio for my new MS medicine.  Simply put, it seemed less scary and had no chance of PML, more people were switching to it, and my previous neurologist and this one recommended it.

And this takes us to where I am now — waiting for my medicine to arrive.  Apparently, my insurance could take several months to a year to process the request for new medicine.  In the meantime, there is another company called MS One to One that hooked me up with a financial aid company that actually sends me my medicine  until insurance takes over.  Not only this, but this MS One to One group is pretty cool — They hold events in different areas (including mine) where you can hear from people that are on my new medicine, people that have MS, etc.  That is really awesome as I haven’t met anyone with MS yet.  I hope to do this, though I haven’t scheduled anything yet.  I’ll keep you posted.

. . . So keeping you posted is where I am going to end this.  Remember those other possibly two bullets at the top that I want to fill you in on?  They are coming, promise!  And I cannot wait!

For more information on the disease-modifying treatments discussed, visit the companies’ websites:

For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.

Author: L

Hi there! I am the impulsive do-er, the jumper, the one tugging to move past comfort zones to embrace a life of sheer surprise. I am a writer -- a pursuer of stories -- because I believe in the destination over the journey. I am a chaser of sunrises and sunsets and cherisher of the moments between. I have an overwhelming curiosity, an insatiable desire travel, and an obsessive yearn to turn dreams into realities. For all of these reasons, the word that best summarizes who I am is "seeker" -- I am forever a seeker.

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