Multiple Sclerosis: the nitty gritty

be fore-warned:
this is a really long, detailed post, 
outside my usual norm. 
trying to answer some specific questions I get about MS.

 i really, really like hydrangeas.

 Before a MRI report came back with the words
demyelinating plaque cannot be excluded
I knew very little about multiple sclerosis.
what I did know was kinda the worse-case-scenario.
annette funicello, anyone?

After my doctor gave us the MRI news, however,
we were googling even before we made it to our vehicle.

we've kinda been on a MS-crash-course the past 6 months.
we {read: I} went through our fair share of panic and near-hysteria.
but, lots of information and more of God's grace later,
we're doing okay. really, really, really okay.

but, obviously, I get lots of questions about MS.
I never mind answering them.
actually, NOT talking about MS is harder than talking about it.
NOT talking about it is kinda like the elephant in the room, right?

so, here's my blog version of an MS crash course.


What in the world IS multiple sclerosis?

it's a disease of the central nervous system
{your brain and spine}
you know how an extension cord has the plastic coating around it?
that's kinda what our neurons have in our nervous system - 
they have a protective coating around them.
{called the myelin, for all y'all out there who, like me,
want to know every.single.detail. possible.}

well, in MS, for whatever reason,
my body attacks that protective coating.
 {have you ever had your curling iron touch the power cord and melt it a bit? 
that's what's happening - that protective coating is gone}
when that attack on the coating happens, it leaves a scar -
{sclerosis is the latin word for scar}

that scarring is what shows up on MRIs.
it's also what causes symptoms -
as my nervous systems sends out signals, it runs along the nerves, 
hits that scar, and, in me, caused tingling, weakness, and burning.

What kind of MS do I have?

I have relapsing-remitting multiple sclerosis.
this means that there will be attacks (also called relapses or flares),
which is what I had in January and February.

in between attacks (relapses), there's a remission period.
however, each attack can cause permanent damage that may never go away.
after my attack in February, 
I have left-sided weakness and tingling that has stayed.

What's the prognosis?

it's hard to know.
that's the scary and unsettling part of MS -
I could be fine for even several years, get an attack,
and then need a cane, walker, or wheelchair the rest of my life.
I could have a mild course of MS and live with mainly sensory symptoms the rest of my life -
tingling, burning, weakness -
or I could have a severe course of MS and be in a wheelchair and need daily assistance.

twenty years after diagnosis 2/3 of MS patients will still be able to walk
 -although they may need a cane or walker-device.

{you can read more about prognosis here}.

What symptoms do I have every day?

almost daily there will be a point where my left arm goes weak,
my left hand will burn, 
or my left foot will tingle.

compared to using a make-shift cane in February, I can live with a little bit of weakness!

sometimes I get really, really fatigued, too. 
that's a major issue with MS,
and we just try to adjust and nap. 

Is my medicine helping?

My daily injections don't really work like that...
they're really for trying to slow down the long-term disease progression
as well as reducing the frequency of attacks.

most people on treatment get on average on attack/year.
most people not on treatment get three attacks/year.

What can we do to help?

i'm really fine right now.
if you saw me, you wouldn't know I had MS, 
although a very observant person may see me occasionally rubbing my left hand or strategically picking up a cold water bottle with my left hand to cool the burning.

you CAN ask about how MS is going.  
casually asking gives me an opportunity to talk about it if I want to, but also just say something like "oh, I'm good", and change subjects if I don't want to talk.
this is with any serious issue, right?
NOT talking about it is WORSE than not saying anything 

for fear of not knowing what to say.

{and, ya know, you can always bring me coffee, a coke, or chocolate}.

 You're really okay, right?

I get this question the most.
emotionally, spiritually,
i am so very, very okay.

my dreams for the future?
they may not be what the Lord has for me.
the apostle Paul?
I'm sure he didn't envision imprisonments, shipwrecks, 
even snake bites
for his life...
and yet he said what happened to him served to 
advance the gospel and encourage his fellow brothers and sisters in Christ.
{philippians 1: 12 & 14}

MS is serious.
I get that.
I am extraordinarily humbled that the Lord would allow me 
to deal with such a heavy situation.
and maybe, somehow, in some Divine way, 
use it to help advance the gospel,
to encourage my fellow Believers,
to bring more Glory to Himself.

{extremely, extremely humbled}. 

my prayer almost daily is that I will walk this MS journey well.
may my heart remain steadfast -
confidant, immoveable,
always  aboudning in the work of the Lord,
because I know that my labor is not in vain.
{I Corinthians 15:58}


do you have a question about MS that I haven't answered here?
leave it in the comments and I'll answer it.


 upon walking into Pottery Barn for a mommy-daughter-shopping trip:

"Let's not go bye-bye, mom, okay? Let's stay at the mall? okay? okay? okay, mom?"

ah, grace. i hear ya.

a girl after my own heart, you are.

Grace upon Grace

Grant, while celebrating his papa's 60th birthday last week.

"For we have all received from his fullness one gracious gift after another."
John 1:16, NET Bible

One gracious gift after another.
that's so true, right?
my heart has been overflowing with thankfulness recently.

I started treatment for MS a couple of weeks ago -
a daily injection.
I was nervous about it, because, in all of my obsessive-compulsive reading about every.single.thing.possible MS-related,
I had read it could hurt.
a lot.
or sting, burn, itch, welt, hive.
a lot.

but you know?
for me, 
they barely sting.
I've gotten zero reactions to it.

{one gracious gift after another}
like having zero reactions to shots that will likely be long-term.
like having treatment available at all.
like having MS diagnosed early enough to start treatment early in the disease course.
like having a fabulous neurologist really close to our house.

{one gracious gift after another}
like the Spirit giving peace that passeth understanding,
even with the knowledge that my disease could become debilitating.
like knowing that this world is not our Home,
and though we may encounter various trials,
we have a Living Hope.
Hope for this life -
that I do not need to fear, for He is with me.
Hope for eternity to come.

one gracious gift after another.