EMG Results And A Diagnosis

  So today I had an EMG done.....was not painful at all they did not use needles some sort of conductor thing and metal probe things. ( Well not painful for me.)

 So my left side is pretty bad , the nerve conductors are like blocked or something.

I sort of figured that.

Anyway I now am diagnosed with CIDP  Chronic Inflammatory Demyelinating Polyneuropathy.

It is an autoimmune disorder, my body has decided to attack itself ...to attack the myelin sheathes around my nerve fibers.

The destruction or demyelination of the nerve leads to an impaired ability of the nerves to communicate and function.

That is all I am going to say about that right now.  It is bad.

Also the EEG I recently had showed a seizure from the left temporal lobe.

The Dystonia is due to the CIPD.

Now I am hopefully going to be getting IVIG...to stop the progression.

We don't know how much or if it is actually going to make me better but if it keeps me the same that is better than worse...I have nothing to loose.


Thanks for your thoughts and prayers.

My Lady Of The Sea

 This is my lady of the sea or rather she is the sea...the sea and she are one.

I have been working on her husband...a ship got caught in his vast beard.  Stories have be brewing in my mind about them, not sure I will ever write them all out but if a picture is worth a thousand words I guess I have made progress.

Things have been rough...my eyes decided to go crazy , the pupils getting huge and not wanting to respond. Yesterday it did not happen though so I am very glad.
Been very exhausted, lots of spells or...whatever you wish to call them.
Also have been having trouble sitting as it feels like something is pulling me over.
 I am a bit like the lady of the sea ...perhaps I haven't really got legs at all they are really a great mass of seaweed twisting and writhing about.

The kind words and the prayers of friends has been very much appreciated.

Holes In The Day

 Since last Tuesday things have been pretty rough.
     Lots of seizure like events  (distonic storms?)


Imagine you are talking with someone and all of a sudden you went forward into the future , maybe they quit talking to you maybe they are not even sitting by you anymore.

Now imagine this happening fifty times.....a big chunk of you day just went bye-bye.

Most people don't black out but I do...I have been told maybe I pinch something off in my neck.

So...the Ldopa was increased so has the nausea.

I did not think I could stand it if I went backwards....but I am not God and for some reason it happened.

Yesterday I went to the lake with family and friends. I still enjoyed the day , I just wish it wasn't full of holes.

Trusting is God is what I must do ....and pray.
I can do no other.....
So help me God.

I.V. And Other Happenings...

  Yesterday I went to i.v. for the first time in quite awhile, I had to tell some people I know about all the stuff the happened to me since last time I saw them. The hospital stay, withdraw, Dystonia, levadopa....I am going to be an Aunt ( they normally ask about Katie too) .
  Wow this year has been a bit extreme, so it seems.

 Now on to something else......
I seem to be falling down too much ( in my opinion) , I think I am either falling asleep or fainting. Mommy thinks it is a seizure type thing.

 I am not sure what to think about it, I still am doing a lot better in my opinion even with the fainting or whatever it is included in the number of seizure things I have it is still way way less than what I was having.

One thing that is incredibly annoying is when people ask me what am I going to do with my new freedom....well I don't really have much change in that , I still am having stuff happen every day , I cannot drive , I cannot walk far, I still fall  ( at random hours of the day) .  Yes I am very much better but I am not completely well.

I know they do not mean to be annoying ...I am just frustrated  with my body , and for some odd reason that question usually leaves me saying " I don't know" , which I probably really should explain how I currently am instead of just " I don't know" , If you want to know why I say it I'll tell you....I feel like a party pooper when I tell people how I am .

  You know ...people are so excited ( I am too) but sometimes I feel like I am a disappointing downer when I am truthful.

As a matter of fact , it is part of the reason I hide stuff from my parents...Not only do I find trips to see the white coated people ( doctors) unpleasant I feel like I am raining on somebody's parade.

 So ...I am doing a LOT better however.......I am not cured.

 On to something else....
I went shopping a bit after I.V. and bought a new dress from Gabes and a white sweater for my church dresses anyway, when I came home I tried on the dress and found that the buttons did not match up with the button holes!!  I really did like the dress so I cut off the buttons and sewed them back on in the proper places, it was not that hard to fix plus the dress was very cheap .  So that was that.

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.