I don't have a clue what's going on

[chefsalad]

Hi everyone. I have been having myocolonic twitching pretty heavy for the last 2 years. Ther are close to whole body  contartions I guess you could say but only last a couple seconds. Sometimes 20-30- even more a day. The thing is when this is happenening I feel as if someone but a live electrical cord in half and is zapping me with the open end. It's horible. I'm menatally fried and aggitatedfrom this. Some days it seems it doesn't stop. I went to a nuro 2 years when I was on Hep C treatment. He did that tapping on the knee and supposedly I was having the jerks at the same time so he said from his reflex tap. Had 3 day EEG(?) and had to mark down my twicthes, but apparently no sign of seizure disorder. They seem to be getting worse and the sensatio is much stronger. It's become a big part of my daily life and I no likey...lol. Does anyone have something like this? The strong yet ridiculous twitcing I could maybe get away with, but the sharp jags of pain I can't. Any advice, any type of tretment for tis..anything? There's no way i can go on through life like this.Thereare days I want to leave just becuase of my loud shrieing cockaiels. i just feel so obverwhelmed. Oh please heellp. Any wirds of kindness would help. Thank you!

[suzsibs]

Hi
I am like you and theasian, I have spinal myoclonus and reflex myoclonus. I have a group on facebook 'Spinal Myoclonus' if you are interested. Theasian is a member and we have one or two others, just somewhere to vent and compare symptoms.
I take clonazepam, but only at night to help me sleep through the jerks. My heart goes out to you as it is not pleasant. I've had tests left right and centre over the last 4 years and have still been unable to find a cause, but I am pestering my doctor for every test available to try to find a reason and the right treatment.
You are not on your own with this disorder and I know just how you feel...ugh!!!
Suz

[theasian]

Hi
Sorry to hear that you are going through such a terrible time. I've got spinal myoclonus. Did basically every test in the book: MRIs, EEGs, EMGs, lumbar puncture and bloodwork but it didn't show anything. It used to go none stop but my neuro put me on antiepileptics, had to try a few before I found something that works (sodium valproate, keppra, clonazepam, clobazam, lamotrigine)
My neuro says that spinal myoclonus is kinda like epilepsy but not epilepsy at the same time. With epilepsy the signals are from you brain so they can be picked up on an EEG but with spinal myoclonus they are from the spine so an EEG can't pick it up
Hope this helps
Take care