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New diagnosis of Myoclonic Epilepsy
Mon, 12/11/2006 - 13:40Hi. I was diagnosed with generalized siezure disorder last spring. I have since been having a lot of muscle twitches and jerks in my legs and head. My doctor always dismissed the symptoms until I forced the issue and she then sent me to a neuro who promptly diagnosed me with myoclonic epilepsy, which is just what I thought. I've done a bit of research and posting regarding myoclunus, but now that I have a definitive diagnosis I would like to get some feedback from others with myclonus. I am curious to know what kind of activity you have experienced, what triggers your "jerks", how the meds work for you, etc. I was initially on dilantin. My neuro is going to wean me onto (something that starts with a "z"- darn that epileptic memory!), and then wean me off of the dilantin. I just would like to hear about some other experiences from you all, and see if your muscle spasms were able to be controlled. Thanks and Happy Holidays!
Heather
Comments
Re: Re: New diagnosis of Myoclonic Epilepsy
Submitted by mary_g on Tue, 2006-12-12 - 11:19
Heather,
I was seen by a neuro about 4 weeks ago and he told me that I had Mycolonic sizure's. His first step was an EEG a 20 min. window. Had a normal EEG. Next step a 24Hr. EEG and now I'm waiting on the results I know that something is wrong. My next appointment is Dec 18., will they tell me over the phone what my problem is or will they tell me at my next appointment? I think the next appointment.
My jerks have been going on all of my life and I thought everyone did that, until I started counting them. One day I had 16. I also stare for a few moments at a time. Now my left arm is tingling and my left ring and little finger feel funny. When I jerk here's what I do... It starts with my head shaking ear to shoulder and goes down my body to my arms (they usually bend at the elbow and up in the air) then it stops at my waist. Then I feel like someone has stepped on my chest and I make a sound. Boy do I feel like I'm falling apart. I'm 43 and a hairdresser. Will I have to quit my job?
I'm currently looking into different meds that the Dr. may put me on. I don't want anything with bad side effects. But I guess I'll have to wait to hear what he says is wrong. I don't want to gain weight I've lost 30 pounds in the last 5 months.
If anyone out there has any idea what he may prescribe it sure would help. I just want to educate myself on what I know so far! I know that I have a good chance of being medicated. I haven't had any worse seizures yet. And as I understand they could get worse if left alone with no meds. Good luck with you, I'll be reading this post. I'll let everyone know what happens.
Mary
Re: Re: Re: New diagnosis of Myoclonic Epilepsy
Submitted by kimmarief on Tue, 2006-12-12 - 21:30
Hi Mary,
I just wanted to tell you that I too am a hairdresser and wanted to lend a support to you. I just re-entered the E world again after 25 years medication FREE and in need of a friend and support as well. My seizes are different but when I read you were a hairdresser I felt a connection and wanted to be here for you. (so here I am) Hope I can share stories...
Complex Partial with Secondary
Re: New diagnosis of Myoclonic Epilepsy
Submitted by Joan K on Mon, 2006-12-11 - 16:05
Hi Heather, I too have been diagnosed with Myoclonus. The jerks are mainly in my legs but my arms and eventually my whole body jerks if I go into a Tonic Clonic Seizure. Currently I am on Klonopin, Keppra, Zonegran and Cymbalta. I am withdrawing presently from Keppra because of side effects. Good luck to you and let me know if you need any further info. Happy Holidays Joan