It's-so-for-effin-real day

I was anticipating that my next blog would be about our trip to California. But I have way too much on my mind right now to focus on that sort of merriment. Hopefully this will help.

I had my first official neurology appointment today. I could hardly sleep last night too. I was having nightmares that Dr. Germin was either Dr. Leo Spaceman from 30 Rock or Max von Sydow. Both of them carried giant metal needles and were trying to stab me in the spine. I woke up so nervous about the idea of having the LP today. Even though it was only a possibility. But still a nightmare inducing possibility.

Dr. Germin's office was very cold and clinical. I can't say I liked anything about it. It was all black and chrome and sleek. I told Chris I think they used it as a set in the movie Vanilla Sky and I was afraid that I was going to get wiped like Tom Cruise. ( And yes, it always comes back to Cameron Crowe with me.)

But it is official now. I have MS. Dr. Germin's PA Stephen seemed skeptical when we told him the story. He even asked how I knew the word Diplopia. I told him that's the fancy word everyone keeps using with me, I figured it should part of my vocab now. But after reviewing the MRI, he looked very somber. Chris said it was because he was focusing on taking notes for Dr. Germin, but I don't know. So far everyone looks very skeptical until the see the MRI, then they are very serious. It makes me nervous.

The good news is that I don't have to have a LP (Lumbar puncture or spinal tap). At least not yet. And as of right now I don't think I will consent to having one.

The good/notsogood news is that I have an official diagnosis of MS. He didn't even need to check my bands to tell me. He said my MRI was "very interesting" and that he could tell I have problems with left side. It's true. Things like numbness and tingling in my hands and the fact that sometimes my left leg stops working and I trip, I have had I chalked up to being fat and out of shape and they have mostly been on my left side.  We need to have another MRI done of my brain stem and spine. I think I will be able to handle it this time. If not, I have a bottle of magic valiums on my nightstand.

Also, I need to have another test done.  A Nerve Conduction Study and Needle Electromyography Examination. The word needle makes me freak out for a moment. But I guess it's more like accupuncture needles than the giant chrome needle of my nightmares. I will have this done on both legs and arms. The info sheet says it can take 45 minutes per limb!

So yeah. I did pretty well emotionally until we left Dr. Germins. Then I became a bit of a mess. I have been crying off and on all day. It's a combo of PMS and all of this hitting me. I have never had a broken bone, major illness or surgery and now I have to accept that I will require a lifetime of care. I will not always need this many Dr.'s appointments at once. This is a bit of a frenzy because we are in the diagnosis phase. And since I may not have another acute attack for years, I may not have to see a doctor for years. But right now it all feels so absolute.

It's hard to describe why I am freaking out today when I haven't been this upset about it yet. It's a mix of being frustrated that I feel PERFECTLY FUCKING NORMAL when the doctors make me feel like I should feel like an invalid. But I don't. And worrying about how much Chris is worried about me. We had Stephen print off a copy of the MRI summary for us. Chris read it and was all "whoa.crap". He understands what all of these heiroglyphs mean.  To me it's like this:

numbers numbers numbers

Findings: some shit about my ventricles... at least 4-5 small nodular and patchy areas of increased T2 stuff in my white matter measuring up to 12mm in my right frontal lobe.....

Impression: shit shit shit...abnormal T2 signal in the white matter tracts most prominent in the akdjfaklj region of the right frontal lobe ...demylinating process. Otherwise unremarkable MR examination of the head.

All I really want to hear is unremarkable!I wish my brain was really as unremarkable as I want to be. And my spine. Ugh. Can't wait to get the remarks on that :(

I've been feeling really good about this. But today was really bad for me. I found some books I want to read on MS. Including one by Richard Cohen, the husband of Meredith Viera. He has had MS for almost 40 years. (Of course he can't use his left arm anymore, can only walk the length of a city block and is legally blind.) He described his vision as like looking at everything as an impressionist painting. I hate impressionists. If I get to choose I want surrealism and cubism. But honestly, that's really what I had last week with the diplopia. And I hated that too.

Oh and I didn't have a 6th nerve palsy. I had an Optic Neuritis. He said it's not caused by my sixth optic nerve because that would have caused blurred vision, it's from the nerves in my spine. That is what causes double vision. So what are all those areas in my brain from? And what in hell in going to show up on my spinal MRI?

Anyway, I will leave you with some lyrics. We listened to a lot of our favorite road trip music over the weekend and this included the Jimmy Eat World album Futures. The song 23 has always gotten to me but now more than ever.

Amazing still it seems
I'll be 23
I won't always love what I'll never have
I won't always live in my regrets

You'll sit alone forever
If you wait for the right time
What are you hoping for?
I'm here I'm now I'm ready
Holding on tight
Don't give away the end
The one thing that stays mine