Thursday, October 29, 2009

...not what i expected...

i haven't laid in bed consumed by utter anxiety in a long time.
i finally gave up, 2 nights ago, at midnight and came downstairs to get in a more comfortable position, and do some reading.
and praying.
and more reading.
and journaling.
and praying...
and a bit of crying...sure.

my symptoms over the last 48+ hours have progressed so quickly, the onset confusing me and scaring me.
the numb/tingling/heaviness in my extremities.
the tingling burning pain in my face.
the unbelievably uncomfortable pains i have as i try to fall asleep...
it's as though my body feels it has the flu, bad, except i dont....
everything aches.

for some reason, all i kept hearing was the Johns Hopkins specialist telling me i have a 50% chance of one day being diagnosed with MS.
i was all but convinced this is it...this is my slow decline into MS....

my neurologist took me in for a same-day appt.
she's very sweet, i like this neurologist alot.
the other two treated me like a stupid child with too much time on her hands.
one prescribed me an anti-depressant and told me i "suffer from too much anxiety."
(duh, idiot. have you ever dealt with this level of chronic pain?! IT MAKES YOU ANXIOUS!)

the other one (as many of you may recall), told me i have an inability to articulate my pain, rolled his eyes, and told me to go home and "think hard about what you really want to say." oh and his prescribed muscle relaxants that would knock a horse over. no thanks.

so this woman is sweet and understanding and actually lets me TALK...and whaddya know...she actually LISTENS as well.

AND fortunately, at the last minute, a friend persuaded me to leave isaac with her.
that was certainly a gift, because i sat in the waiting room at the Neurologist's office for 30 minutes and IN her office for another 30+ minutes. isaac would have all but destroyed the place, and distracted my already frenzied mind...



all that said, i dissolved into tears the second i sat down, pretty much.
i told her about some new symptoms i'm having and i fully expected her to refer me to have more testing done for MS.

but she smiled when i even referenced MS.
"when you leave here, allison, never think of MS again. put it out of your head. your symptoms don't line up and neither does your brain MRI...this isn't MS."

rather, she sat back after jotting tons of notes and asks, "have you ever been to a rheumatologist?" i was half relieved to hear her dismiss MS, but half exhausted by the notion of annnnother string of specialists, and another litany of tests....

i told her no...no rheumatologists here.

she said what i have sounds alot like fibromyalgia, another nerve/muscle condition...which is far preferable to MS, in my mind. though...i hear it's painful...but yeah, that makes sense since i'm in pain.

pain...check.

of course she ordered a few more MRIs, just because that's sorta her job to get a good picture of the spinal cord to check for additional nerve conditions -- though she's reluctant since she doesn't believe it'll show anything abnormal. (don't tell my insurance company...)

and then she said i should get a: Electromyography & Nerve Conduction Study (EMG).
if any of you have ever had that, please tell me what to expect.
she said it's rather painful, as they stick a ton of needles into your muscles and use electricity to see how they respond. that just doesn't sound too pleasant. i've been a bit slow to schedule that one into my social calendar...

all to say...i'm rather unnerved by it all.

let's be honest, i could show up at the rheumatologist and have them diagnose me with something TOTALLY different. but i'm sure we'll get to bottom of this eventually.

yes, a diagnosis of fibromyalgia is not really preferable.
but, it's a diagnosis.
a diagnosis that has evaded me for roughly a decade.
so i welcome the conclusion of this mystery.
and regardless of anything they say -- i'm still riding on a cloud over the MS being ruled out. (praying my additional MRIs are conclusive to this end, as well...)

and while any rheumatoid condition is a drag...it's not fatal.
until you've sat awake all night wondering if you are dying, it may be hard to see why i appreciate a diagnosis like this...
the worst possible ideas were floating across my mind and i'd think of chad..and think of isaac...and think of them having to take care of me for life...and well, it was unbearable.

so for now (and for always! regardless...) i will choose to be thankful.
i am thankful to my VERY close proximity to wonderful doctors.
i am thankful i have an otherwise healthy family.
i am thankful i get to stay home and that my pursuit of treatment/tests isn't complicated by a work schedule...
i am thankful that my biggest concerns are for isaac and who will watch over him during all of these appts and treatments and tests.

and if that's my biggest concern at this point - i am a very blessed girl.



Proverbs 27:1 -- Do not boast in tomorrow, for we do not know what a day may bring...

2 Corinthians 10:23 -- Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort...

2 Corinthians 12:9 -- But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

Psalms 23: 6 -- Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever.

13 comments:

Nikki said...

Hey Al...

First, I want you to know that i've been praying for you & wiki'ing everything you've been talking about (lol). Second, I have a close friend who has fibromyalgia and i'm going to call her today to find out if she's ever had any of those tests done. If you have any questions for her i'd be happy to either ask or get you in contact with her. She's been dealing with the disease for years now. Let me know! I love you and I know that God is ever present in the midst of all of this...

Julie Nickerson said...

This email breaks my heart. I HATE HATE HATE that you are in that much pain.

I am praying for a diagnosis and that this pain will soon be gone.

xoxo!

I'll get the rest of the pictures to you soon!

Becky said...

Hey Allison! I had to have an EMG when I was going through the stuff before my back surgery. To be honest, it wasn't that bad. It was a little uncomfortable, but definitely not the worst thing I've had done. Of course, I've had a lot of parts of me tested and cut on, so maybe I'm just oblivious...but really, I don't remember it being a big deal at all. Good luck and I hope you get some relief from your pain! I know how frustrating chronic pain can be (and have been in tears in a doctor's office a time or two...) so I really hope they can find a diagnosis and treatment for you.

Becky said...

Oh, and I forgot to say - you can email me if you have further questions about the EMG...
(This is Becky Barber, if the Rogerson throws you off). :)

heather said...

Alison, I cannot imagine what you are going through - the roller coaster of emotions ALONE on this journey is rough - and to deal with that on top of the chronic pain. those are some scary thoughts - the what-ifs. I am SO GLAD to hear that you can rule out MS!! And I"m super glad that you have an understanding, kind doc.

I'm continuing to pray for you!!

glenna said...

Oh Allison, although it's not the diagnosis you want (what WOULD be a "good diagnosis", though?), it's a different possibility in the complete opposite direction of MS!! For that, I'm hopeful that this new doc can pinpoint the problem and bring you some relief that doesn't involve muscle relaxers designed for a large mammal.
I'm praying for you, sister, that the Lord would bring you some RELIEF from your chronic pain. I can't imagine living with it.
xoxo

chrissy said...

wow i miss one day of blogging and i missed THIS. my heart breaks for you but i am so glad you're feeling peace.....
praying for the best diagnosis and, eventually, a quick solving of said problem....

xoxo

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