progressive multifocal myoclonus
 

:)
I am music girl i was diagnosed in 2006 with MS, after a spinal tap i was told i did not have MS.
i was told that i have progressive multifocal myoclonus.has anyone known anyone with progressive multifocal myoclonus?i have been told that it is very rare.
basically it means some of my muscles jerk and it has gotten alot worse.

Later I was told that I have CJD but after 3 months they ruled that out. They said i would have been dead by now.
This illness has affected my concentration, speech, memory, I have chronic muscle spasms, extreme fatigue, my spine twists,arms, legs and neck jerks, i have tremors in my hands.
Several months ago I had an eeg and it said epilepsy of irritative nature; however my eeg in 2005 was normal.
They have put me on keppra which has really helped!
They have also added lamictal i am not so sure about this medication. I think it gives me alot of side effects.
This has been a frustrating illness. i am open to any thoughts you might have.
thank you,
music girl

Welcome aboard!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Hi Music Girl,

At least you've got your music, right? So comforting...

I'm sorry that you face such challenges. It is not easy.

There's tons of info here and lots of caring folks who understand what you're going through.

Here is our link to the Stumble Inn. http://neurotalk.psychcentral.com/forum17.html

I'm sure they will give you lots of advice and tips.

See ya around...

Welcome Music Girl!
 

.....................http://dl9.glitter-graphics.net/pub/...z58lsobcqt.gif.

I hope you are finding your way around the forums ok. There are so many caring people here!
Also, if you wanted to find posts regarding those medications you are in question about, you can use the 'search' feature at the top of the page and type in the med and it'll bring up other posts and discussions that may be of help to you.....

I hope you get answers to the frustrating health issues you are facing.

It's good to have you here !
Rae
:hug:

Hello and Welcome!!
 

Hello Music Girl and WELCOME to Neurotalk!!

I see you've found your way to our Movement Disorders Forum. :)

Please feel free to roam around all of our forums throughout the board!

If you have any questions or need any assitance please don't hesistate to ask...someone will always be alone shortly to help you in any way that we can.

I look forward to seeing you around the board.
:)
Abbie

Hi Music Girl!
 

http://dl6.glitter-graphics.net/pub/...jk1l62jo1d.gif
It's so nice to meet you . I look forward to getting to learn more about you! Welcome!!!:hug: