New Member Introductions Welcome to our community! Come in and introduce yourself to other members!!


advertisement
Reply
 
Thread Tools Display Modes
Old 12-02-2010, 01:59 AM #1
music girl music girl is offline
Junior Member
 
Join Date: Oct 2010
Location: Northern Midwest
Posts: 17
10 yr Member
music girl music girl is offline
Junior Member
 
Join Date: Oct 2010
Location: Northern Midwest
Posts: 17
10 yr Member
Smile 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
music girl is offline   Reply With QuoteReply With Quote

advertisement
Old 12-02-2010, 02:36 AM #2
Darlene's Avatar
Darlene Darlene is offline
Legendary
 
Join Date: Sep 2006
Location: Once a Texan, always a Texan.
Posts: 11,976
15 yr Member
Darlene Darlene is offline
Legendary
Darlene's Avatar
 
Join Date: Sep 2006
Location: Once a Texan, always a Texan.
Posts: 11,976
15 yr Member
Wink 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
__________________

.

"Life without God is like an unsharpened pencil -- it has no point.
Darlene is offline   Reply With QuoteReply With Quote
Old 12-02-2010, 05:35 AM #3
(Broken Wings)'s Avatar
(Broken Wings) (Broken Wings) is offline
Senior Member
 
Join Date: Jul 2007
Location: Kentucky
Posts: 1,614
15 yr Member
(Broken Wings) (Broken Wings) is offline
Senior Member
(Broken Wings)'s Avatar
 
Join Date: Jul 2007
Location: Kentucky
Posts: 1,614
15 yr Member
Default

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...
__________________
(Broken Wings)
.



.
(Broken Wings) is offline   Reply With QuoteReply With Quote
Old 12-02-2010, 04:47 PM #4
Rrae's Avatar
Rrae Rrae is offline
Grand Magnate
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Rrae Rrae is offline
Grand Magnate
Rrae's Avatar
 
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
10 yr Member
Smile Welcome Music Girl!

......................

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
Rrae is offline   Reply With QuoteReply With Quote
Old 12-02-2010, 08:40 PM #5
Abbie's Avatar
Abbie Abbie is offline
Elder
 
Join Date: Oct 2006
Location: In a DARK corner.... not looking for a way out.
Posts: 5,526
15 yr Member
Abbie Abbie is offline
Elder
Abbie's Avatar
 
Join Date: Oct 2006
Location: In a DARK corner.... not looking for a way out.
Posts: 5,526
15 yr Member
Smile 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
__________________
My avatar pic is my beautiful
niece Ashley!

.
Rest in Peace
3/8/90 ~~ 4/2/12
Abbie is offline   Reply With QuoteReply With Quote
Old 12-03-2010, 01:07 AM #6
Friend2U's Avatar
Friend2U Friend2U is offline
Senior Member
 
Join Date: Jan 2008
Location: Great Midwest, USA
Posts: 1,370
15 yr Member
Friend2U Friend2U is offline
Senior Member
Friend2U's Avatar
 
Join Date: Jan 2008
Location: Great Midwest, USA
Posts: 1,370
15 yr Member
Default Hi Music Girl!


It's so nice to meet you . I look forward to getting to learn more about you! Welcome!!!
__________________
~ Friend2U
.


.

HANG IN THERE!

If I had to sum up FRIENDSHIP in one word, it would be COMFORT. ~Adabella Radici

MS/dx2006
BETASERON (Quit May 2011)
COPAXONE (Began June 2011)
Friend2U is offline   Reply With QuoteReply With Quote
Reply

Tags
epilepsy, myoclonus, tremors

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Anyone have Multifocal Motor Neuropathy ?? Braveheart07 Neuromuscular 95 07-26-2016 01:08 PM
Does anyone have SPINAL MYOCLONUS or PALATAL MYOCLONUS? Topsie Movement Disorders 28 12-01-2015 06:12 AM
progressive multifocal myoclonus-diagnosis music girl Movement Disorders 2 07-30-2011 01:36 PM
Spinal Myoclonus and Palatal Myoclonus??? Topsie Reflex Sympathetic Dystrophy (RSD and CRPS) 15 06-16-2011 04:42 PM
Progressive Myoclonus Epilepsy Memphis General Health Conditions & Rare Disorders 0 07-25-2009 04:01 PM


All times are GMT -5. The time now is 08:22 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.