" So, Was She Diagnosed With CP At Birth, Right?"

  That is what the dude thought at my exam Monday. He thought I had CP. My Mommy told him no, I told him no.  Then his eyeballs get big and he says "You mean she didn't always walk like that?"

 Yep....I think I freaked him out a bit. Anyway I rather liked the Neurologist but unfortunately he told me I am too complicated for him to really deal with my case. After hearing my story he said that he thought it was quite possible I have some rare genetic disease....he agreed with the Dystoina thing, but he wants to know the reason for it.

 I did not have an EMG test ....They gave me an EEG!!  Oh , BLAH.  At least they did not use cement, they used some sort of putty stuff that washed out a great deal easier.

I am a bit unhappy that I am so complicated... I am also not glad that people think I have CP (Cerebral Palsy) when I don't.  ( the dude that did my exam is not the first person to say that)

Anyway....I am what I am , I know there are unusual things about me, sometimes I think I will never be understood by the medical community.

Well at least I have a heck of a lot less seizures and that's a good thing, also the sun is out.

Nothing Is As Easy As It Seems.....

  Or that is how it seems to me.  Well......The good thing is that I have a lot less seizures than I used to have, the bad thing is I have been either falling asleep suddenly or passing out.   I did not stop being careful, I still have not had a seizure free day yet but I normally went backwards with a seizure-type thing when I fall asleep or whatever I do I don't know what direction I will fall.  Yes, I fell but that's not anything new.

I am a bit down about this however, but I guess pills are not magical berries.

I guess the passing out thing is a side-effect ( so I am told) . I see a Neurologist Tuesday and he is going to do an EMG.  I think it sounds like a big OUCH . I guess he would know more about Levadopa however, and I guess Dr.s want to know if my leg nerves are very good or not. If they are not good I personally do not want to know, to be honest.  Maybe I should want to know but I do not want to know.

Anyway, I was so happy it was somewhat warm outside yesterday and I went to the Moonshadow  and heard some music and met a new friend. 

Awesome Week...

 So I wanted to say this week has been pretty awesome..the most seizure things I had in a day was 4 , I have not been seizure-free yet but I am hopeful.

I have been extremely tired though, I am not sure why but I think it may be the medicine.

Sort of spacey too.

I can deal with it as long as it helps.

I Hate This Cartoon....

 I really hate this cartoon.....http://www.caglecartoons.com/viewimage.asp?ID={41A990C5-7FCF-407D-8A87-DBDDDE9404EA}
I saw it in the week today.

First of all let me say I believe in free speech and they should be able to publish whatever they want... Second I do not know if I really understand part of the cartoon, I mean is the little fellow with the helmet supposed to be a certain person??
If he is not anyone in particular what does he stand for? The citizens of the U.S.A , or is he just some poor dude who has to wear a helmet??

Any way...since I wear a helmet and often find myself holding a someones hand to help me walk I sort of find it saying I look stupid.
Well I have been called stupid ...and worse, but yeah I guess I look stupid, or different anyway .
I am not stupid though!!!

Since this is The Girl With The Helmet's Blog...I thought It would be appropriate to comment. 

So yes I hate this cartoon.....To be completely honest I don't normally pay any attention to political cartoons but this one caught my eye.

Levadopa

 So as some of you know, I started taking Levadopa on Monday . Well it has made quite a bit of difference ....Yesterday I only had 1 seizure thing, the day before 3 , and the day before that 1.

I am finding it hard to believe that this is not just a dream....something that will be gone in the morning as soon as I wake up.

I know it is real though.

I am excited that the seizures will hopefully be gone soon.

I am hopeful that my legs will get better.

These have been the best days in years.

Anyway ....I am curious to see what the psychologist says about me now.

A Missing Piece Of The Puzzle Of My Affliction Found???

 My Mom looked up some of my worsening symptoms that have happened since I got off the Valproic Acid.

Some things got A LOT worse ...to be completely honest things did not really get better .

One of the worse things was tongue spasms. It had gotten quite bad and it usually happened  many times in the day and lasted a half of an hour most times.

I pretty much have been eating one meal a day because of it.

I was hoping it would go away but it got worse so I came to the conclusion that I'd better tell my parents.

I have a habit of waiting as long as I can hide it, or until I know I can't stand it much longer.

Maybe not the best habit, but I don't want to be going to the doctor for everything.

Anyway have you ever heard of Dystonia ???

Well it can mimic seizures and the way my legs are it appears that I have it.

Anyway Mommy took me to the Dr. yesterday ...they said I would have to wait until Friday but someone canceled and I went.

He said by the way I walk and my tongue and how my neck goes when I have a seizure like event...it seemed like a very strong possibility. 

He prescribed me a drug called L dopa or something..and some muscle relaxing pills to take before I go to sleep or when needed.

Well guess what?? I took the L dopa stuff as soon as I came home and I only had 3 seizure things after I took it and zero tongue spasms!

Today my leg is not turning in so hard as normal and it was not hard at all to get in the brace.

The only thing about Dystonia I don't completely fit is that I lose consciousness when a seizure thing happens...But  I could very well be pinching something in my neck when it happens. My neck is a bit messed up and I have had a chiropractor work on it before. 

Mommy found out about Dystonia, on the internet.!!

the Dr. is trying to get me in NIH..it will be awhile until I get in there.

I am hoping this is it and a big chunk of the mystery has been solved.

I will see how I do today.