How I Became a Dystonia Patient

I had my Botox injections on Wednesday.. and it's now Thursday.. just one day later. When I woke up this morning, I turned to my left to see what time it was.

OMG!! I TURNED TO MY LEFT TO SEE WHAT TIME IT WAS!!!

It wasn't a big turn, but it was a turn.. about 10 degrees!! OMG!!! I started crying, I was so happy!!!

I screamed to Mark, "Honey look!!" as I turned my head back and forth a tiny little bit each way. OMG, I can move. Not a lot, but I can move!!! I've been essentially paralyzed for 10 weeks, so I am sooooooo happy, sooooooo excited!!

And then it hit me. OMG!! I started crying even harder. OMG!! I am so sad.. and so scared... and so happy.. and so excited.. and so sad.. and

OMG!! I have a PERMANENT NEUROLOGICAL DISORDER!! I HAVE DYSTONIA!

Yes, I do. I have Dystonia.

My new life started February 6th, 2012, my changed life...a life of pain, of disfigurement and disability... a life of Botox and pain meds.. a life hoping for a permanent cure someday.. and on this day..

I became a Dystonia Patient.

And this blog is about...  My Life With Dystonia

Very First Botulinum Toxin Injections

After numerous trips to every doc I could imagine, my neurologist is becoming my go to guy!

He has ruled out disease after disease, injury, blood disorder, one after the other.. narrowing down his options.. until last week..

"Nat, there is a very rare, incurable, neurological disorder, called Dystonia. It's a movement disorder that causes the muscles to contract and spasm involuntarily, because, like Parkinson's disease, the neurological mechanism in your brain that makes muscles relax when they are not in use, does not function properly. It causes opposing muscles to contract simultaneously as if they are competing for control of your body parts. The involuntary muscle contractions force the body into extremely painful, twisting movements and to be stuck in awkward, irregular postures. But, I've never seen symptoms simply appear overnight, like your symptoms did, so I'd like to try treating it.. if the treatment works, we can positively diagnose you with Dystonia."

He explained how Dystonia, unfortunately, has no 'cure', but can be symptomatically treated with Botulinum Toxin injections.. Yes, Botox! Apparently, there's cosmetic Botox and medical Botox. Who knew? Because Dystonia is a neurological disorder, these spasms and cramping muscles, have to be treated neurologically, by tricking the brain, instead of treating the muscles (which is why medication after medication didn't work). Each of the cramping muscles is injected with the Botox.. and Botox is essentially a poison.

This is done every three months. Hopefully the Botox lasts the entire three months, but typically, it fades from the body within that time frame. The Botox injections poison the muscle's nerves so that the brain cannot send messages to the muscles to cramp up. The Botox, allows the doctor to trick the brain, to hide these muscles from the brain, the poison stops the mixed up messages from getting through, and allows the muscles to relax a bit, and to stop competing with each other. And hopefully, ease the cramping, ease the stiffness and ease the pain.

I left his office and he ordered my Botulinum Toxin prescription.

And today, I went in for my Botox injections. And he injected muscle after muscle after muscle.. It had to be about 20 injections.. until my neck and back and shoulder blade area were all treated. OUCH!! That was definitely not fun! :(

Doc says if I have Dystonia, then I should feel some relief in about 7-10 days and hopefully it should last just shy of 3 months!

So now... we just wait and see what happens....