Tuesday, November 16, 2010

And the Winner Is...?

I had a follow-up appointment with my neurologist yesterday, and I had to drive half an hour to see him, for a 3 minute appointment. GRRR... Anyway, I don't have epilepsy. It's still not tourette's. The neurologist has no other ideas. He says normally the next course of action would be to send me to the movement disorder clinic, which I've already been to, with horrible results.

He is going to recommend that my family doctor sets up a 24 hour blood pressure monitoring test, as well as a test to check if I have POTS (These tests would be for my unexplained falling down, and have absolutely nothing to do with my twitching).

The weather lately has been weird. It's at its coldest point this year so far, and it's still significantly warmer than one would expect for this time of year.

I have started taking Gabapentin (Neurontin) 300's 2-3 times daily, and they seem to be reducing the frequency and severity of my twitches. Which means I don't dislocate my shoulder every time I twitch now... Just sometimes. When I looked at the symptoms this drug is used to treat, it fits the symptoms I have; including pain and spasticity, as well as helping me fall asleep and stay asleep.

In other news: I feel like I was attacked by an evil clown. It feels like he tried to turn my spine into a balloon animal.

I have a new stupidest injury... I really wish I could stop accumulating these... Yesterday I was washing my hands, and I grabbed some paper towel to dry them off. While I was trying to dry between my fingers, I simultaneously dislocated ALL of my fingers at the base knuckle. It hurts to do anything with my hands today, and I've been dislocating and subluxing my fingers all day.


Achelois said...

I know he has ruled out epilepsy but did you have a drop attack whilst being monitored at all. Just wondering about startle epilepsy.

Its weird because I think I mentioned my relative who had many of the symptoms you have, with regard to twitching, drop attacks etc. (no EDS) and the problem with her was that she had POTS like symptoms causing her to lack oxygen. She so far has had the electrical impulse thingy in her heart zapped, a few baloon angioplasty's followed by a heart by pass and all these symptoms have disappeared. Not saying this is what you have but sometimes wonder if they are related to the EDS at all and its acting as a red herring of sorts.

I just wish you had a day where you got a break from it all.

Take care

BubbleGirl said...

The problem with the test they did was that I was laying down during the entire thing, and aside from telling me to close my eyes, and then open my eyes, I was encouraged to "take a nap."

Almost ALL of my twitching happens when I am sitting upright. How can I POSSIBLY fall down if I'm already LAYING down???

I am so annoyed with all doctors, nurses, techs... The whole medical system. It's inefficient. If they would listen to the answers I give to the questions they ask, it might be easier to figure out what is wrong with me.

I wish I had a normal day somewhere too.