Thursday, January 13, 2011

Preparing for Neuro Appointment

I'm in this hole right now, where my whole life is consumed with figuring out with absolute certainty what the hell is wrong with me. It's frustrating that this is consuming me but it is, after all, my life. The wonder and the wait will slowly eat away at you, if you're weak.

But I am not.

I have learned a shit load from my research and I am proud of that. I always use my newfound wisdom to help others whenever I can. One friend recently said this after I gave advice on a forum...

"Hi, MS'ers. Sarah is a walking encylopedia on MS. Everything she's ever told me checked out with my Neuro. She's worth listening to. She's also an upbeat person when ur down!!"

She failed to mention that I cuss a lot. I have to get it out somewhere, we have a swear jar here and I'm running out of quarters. :) But really, things like that make all my headaches and frustration worth it.

So between now and January 20th I am researching Fibromyalgia (FMS) and Restless Leg Syndrome (RLS). Like I need another issue, but I'm starting to think my leg pain is one or both of these diseases. I hear they like to strike together. I'm also researching Magnesium and the positive effects it has on the human body. For that, I've heard that magnesium works much like the pain reliever I'm currently taking, Neurontin. We'll see. I'll share more when I know.

P.S. I definitely need a new blog design because this one is hurting my eyes. Coming soon I hope.

Tuesday, January 11, 2011

The Introduction

Who am I?

Well, first off I am a wife and a mother. I have two children, a son who is 9 and a daughter who is 3. I am married to a dashing young lad (he's actually older than me) who is a Pilot in the military. And let's be honest ladies, any man in uniform who is out there protecting others instantly becomes a million times more delicious just because of that. I'm a lucky girl.

The family and I currently reside in Southern California with our 3 dogs and 2 guinea pigs. I love dogs. Guinea pigs, not so much, but they're cute. The "pigs" live in my sons room and are his responsibility. Surprising, they're still alive and seem to be doing perfectly fine.

Sounds pretty good, huh!? Well, here comes all the bullshit I'm dealing with. I'll just deliver the facts and we can go from there.

- October 29, 2009 - Diagnosed with Relapsing Remitting Multiple Sclerosis or RRMS
- November 11, 2009 - Started injecting myself daily with a disease modifying drug by the name of Copaxone.
- June 22, 2010 - Found out I was misdiagnosed and I actually don't have RRMS but that I have NMO, Neuromyelitis Optica aka Devic's Disease.
- June 27, 2010 - Stopped my daily injections (I never missed one just so you know. Even when my autoject started acting screwy and I had to do it manually. Eekkk!) The disease modifying drugs used to "slow the progression" of MS do diddley for NMO.
- November 17, 2010 - Met with an NMO specialist who at first glance thought that I did not have NMO. Good News! But told me that I do have a syrinx, a fluid-filled cyst within my spinal cord plus something else but he was unsure if it was MS and wanted to run some tests.
- November 17-18, 2010 - I went through 7 different tests during this visit and had to wait until January 4, 2011 for the results.

Oh the torture.....!!! If you've ever had to wait for test results that could majorly change your life, you know how I was feeling.

The Results:

I have slight color deficits showing on one test. I do indeed have a syrinx and the condition for that is called Syringomyelia. I do not have NMO but now I have possible MS. Now let me remind you, this is the NMO specialists, he is not the one who diagnosed me with NMO and he's not the one who diagnosed me with MS. So it seems like all this work that's been done to figure out what the hell is wrong with me over the last almost 2 years has gotten us nowhere. I started this journey in May 2009.

I meet with my original neuro later this month. And oh! He still thinks it's NMO. LOL! But hopefully these recent test results will give him a little more insight and we can all agree on something.

So there you have it, the extremely short version of my story. I am starting this blog because writing is very therapeutic to me, and I have a lot of shit to say.