Tuesday, February 3, 2009

In Pursuit of a New Diagnosis

For the last six years I have been taking a holiday from my regular life. I've been on 'sick leave.'
It almost seems comical that so much time has past me by. I've been absent from my career, my friends, and missed so many events. Even my wedding... That's right, my first marriage, and I was too sick to have a ceremony that in any way resembled the one I'd been dreaming of since I was a child. Instead, we went to a hastily arranged 'quickie' wedding at a marriage commissioner's house. No one was there with us, as nobody knew of our plans. There were no flowers, no champagne, and no celebration. My new husband took me to lunch afterward, but no one had any idea that this was our first meal as a married couple. I felt very alone at that moment.
My husband had to get back to work, so we went home, and at his request I removed my newly placed wedding ring before getting out of the car, so my mother would not know what we'd done. The one tangible symbol that I was married, and I had to lay that aside, as well. I cried until sunset.
I am so blessed to have my wonderful husband, but our wedding day left much to be desired. Just another non-event in my uneventful life. Celebrations, so it seems, are for others. That was almost five years ago, though, so I have moved on.
But I digress.
Five doctors have diagnosed me with a brain disease, for which no treatment has helped. No drugs have helped the 24 hour-a-day pain I experience. There are times where the pain is so hideous, I hardly believe I can survive the next five minutes of it, let alone a few days. Thus, I've been living with the diagnosis of Intractable Migraine disease.

In October of 2008, my neurologist referred me to another neurologist for a consult. The new doctor had a different idea about what might be wrong with me. He had a theory my problems stemmed from intracranial hypertension. If that diagnosis is correct, then I might benefit from some treatments I've never had. I went for yet another series of tests. The last one was in December, but it was unsuccessful, so I'm having that one repeated (a lumbar puncture, AKA a spinal tap) tomorrow at Alexandria hospital, so that they can use a method called fluoroscopy to see the spine. Hopefully, they can withdraw some fluid this time, and get some information from analyzing it. If my intracranial pressure is indeed too high, the doctor says I may experience some relief from the head pain within a few hours after the procedure. Many tests will be run on the tubes of CSF (Cerebral Spinal Fluid) that they retrieve, and perhaps we'll get some good information from those.
At this point, I'm trying to live in the moment of getting a proper diagnosis. I can focus on treatment options later. It's been a long quest to get here, and I never could have made it without the love and care of my husband, Bob. He is my rock, and evidence to me that God is alive and well. Even on the longest, most awful days, I know I'm not alone or forgotten.


Pinky said...

Oh girl I feel your pain, it took so long for my hubby to be properly diagnosed with MS, so many spinal taps and every other test under the sun. Hang in there!

Heidi M said...

Your story touched my heart. I will be keeping you in my prayers.

Lissa (aka The Untamed Scrapper) said...

Oh my goodness! While I don't suffer nearly as much as you do, I know all too well what chronic pain feels like. I've been in "limbo" awaiting a complete and "real" diagnosis for 7 years now. My prayers are with you for exceptionally great results from this new LP!

Jenny B in Indy said...

HUGS to you (and prayers).
I was diagnosed with MS recently and while it's a horrible disease and affects me greatly, I cannot imagine NOT really having a TRUE diagnosis. I pray that something works out for you and a doctor is able to finally help you. Your story just breaks my heart, Amy.