Thursday, May 10, 2012

Neuromyelitis Optica

I saw my neurologist yesterday for the results of my spinal MRI.  Not only do I have a lesion on my spinal cord (damn!) it is a very looong lesion...from C2 to C6.  My first reaction was: damn...I have a lesion, my second reaction was oh, well, at least its only one?!  Ignorance is bliss, isn't it?  Because apparently the doctor suspects I may have a sub type of MS OR an entirely different disease (depending on which researcher you talk to)????  What the hell????  So, she starts talking about NMO (neuromyelitis optica) and how she wants me to have a blood test to determine if I have it.

Let me just say, I had never heard of NMO until that moment, and the way she was describing it (in a clinical kind of way) made me think it wasn't so bad.  She was talking about how the treatment is different for NMO than MS (NMO doesn't respond well to the disease modifying drugs) and I was thinking 'well, at least there is a treatment'.

I should have realized there was more to this NMO when the clinic nurse asks if I want to come talk in her office.  I didn't even know she HAD an office??  Still clueless, Brad and I sit down in her office where she basically tells us that NMO  can be more serious than MS...more frequent relapses, more severe, less chance of full remission, 'ya, da, ya, da, ya, da'.  Okay...still relatively clueless, because I'm thinking...sounds a lot like MS and I have NEVER recovered fully from a relapse anyways (hmm...that may have been a clue)...always have had residual effects, so this NMO doesn't sound that different. 

So, we leave the clinic to go to the lab for the blood work and then go on our way.  When we get home, I decide to look up NMO...this is where the saying 'ignorance is bliss' really has meaning.  And where my stress begins and I start to freak out...a bit...

The part that is freaking me out is this, which I have read in several abstracts:  "In general, attacks of NMO tend to be more frequent and severe than they are in MS.  The major risk to patients is severe damage to the upper spinal cord, which can lead to inability to breathe on one's ownThis may be fatal. ...what the f&*^!?!?!

I apologize for the language, but I am NOT a happy camper!  MS was bad enough...but at least you didn't die from it!  All I'm hoping for now, is that the blood test comes back negative and that I don't have NMO. 

And if I do? ... well, I'll cross that bridge when I get to it.