Myoclonic epilepsy anyone?

[theasian]

Hi all.

My doctor said that he thinks that I may have myoclonic epilepsy. I'd just like to know if anyone else has it and what are your symptoms.

Thanks

[legalgirl5]

Hi...

Yes it is nice to know we are not "totally weird" and it is just us!
First off....you have to "like" your doctor..After all they have OUR lives in their hands.  What they do affects us in every aspect of our lives.  Sometimes, I think Doctors never think how their tests, guessing, drugs and assumptions affect us. I understand they try their best but lets face it....when we walk out of that little room..they move on to the next patient.  We go home with a new prescription and orders for a new and more invasive test.  
I have to admit I am getting fed up!
Anyway....Did you try Lamictal?  They put me on Zonegram, Kappra, Topamax.  None of those drugs were nice to me.  I am so far doing very good on the Lamictal.  I was doing so well I was able to drive again after a year.  Then they did an SSEP on me which put me into a massive seizure.  Now, I am waiting to see how my doctor induced seizure will affect my life.
I hope that soon they will get your jerks under control.  I hate them...They hit me when ever they want.  It is embarrasing and I hate loseing control.  I tend to be a control freak!
I also hope that you can find a way to get back to your old Doctor.  I at least have a Neuro I like and trust.
Hey, whats up with this brain biopsy?  That seems very extreme and not something I would be willing to do unless they could fix me at the same time.
Keep in touch and let me know how things are going.  I am always here and it is nice to have a friend who knows how you feel and what your going through.
Susie
legalgirl

[theasian]

Finally someone that has kinda the same thing as me (not that I'm saying it's a good thing, it's just good to know that I'm not alone) I used to have the jerks all the time non stop until I started medication. It wasn't bad, it was just really bothersome because whatever I was doing it kinda looked like I was doing stomach crunches at the same time. I had 2 "fits" before I started medication. Those were really bad because the jerks were super strong and I could only lie down. I also knew exactly what was going on around me and I was able to speak but it was really difficult because it felt like the wind was getting knocked out of me with each jerk. I still get jerks every now and again but it's not that bad, they usually happen when I'm lying down.
I saw a neurologist, in fact I saw her 8 times in the space of a year because my jerks would respond to the medication then it was almost as if started tolerating it and the jerks would come back. In March she referred me to a more senior neurologist because she said it was unfair to me to be a medical mystery to her when someone else could help. This neuro really knows his stuff but like her, he only has his suspicions. If I could, I would go back to my first neuro because her bedside manner is so much better, I've seen the one I'm currently at 3 times and I still don't like him.
I've had basically every test there is, except for a brain biopsy which the neuro said would be the absolute last thing we would do if his suspicions became more of a diagnosis and he just wants to confirm it. I've had 2 MRIs of the brain and 1 of the spine, 2 EEGs, an EMG, all the bloodwork and a lumbar puncture as well and everything came back normal. It's good to see that you still have a sense of humuor, thats the 1st thing alot of people lose. Thanks for the answer!

[legalgirl5]

Hi...

I have Myoclonic seizures and all of the rest of them.  Myoclonic seizures are what I call the "jerks".  Sometimes they happen when I am sitting and a leg or arm will jerk.  Sometimes when I am in the kitchen..better duck! I usually always have them at night before and after going to sleep.

I have also had them where my entire body goes into convolsions yet I know, what is going on around me and 'I think" I could talk if not so busy; trying to get control of myself.

I cannot reccomend a Neurologist enough.  They have good medications that will help to control them.  Have you had an MRI?  Have you seen a Neuro?  If not...please do.

Good luck
legalgirl5