Body movement disorder

[Judi4]

Hi everyone,. I'm still waiting for my official diagnosis but wanted to know if anyone has experienced whole body jerks and sometimes uncontrollable shaking. This can happen at any time of the day and not necessarily tied to stress. The worst it gets is usually after I've been sleeping for awhile and it wakes me up. It can last anywhere from a 1/2 hour or more, the longest was 4 hours straight. When I went to current neurologist he thought maybe seizures, and after performing an EEG said it wasn't seizures but the test showed there was something going on. He then kinda dropped the ball. Again, I have my appointment set up with MS specialist at the end of the month. I'm just feeling down because this keeps happening with my body.

[Jesmcd2 CommunityAmbassador]

Hi Judi l spent all summer with my leg jerking 24/7. It would wake me up at night also and be painful. I hope your ms doc has answers for you. It's the not knowing that's the worst l feel.

[Judi4 in reply to Jesmcd2]

Thanks for replying. I'm sorry that you have restless leg syndrome, my husband has that so I'm aware of it and how his legs make jerky movements whilst he sleeps, but mine isn't restless leg syndrome, it involves the whole body. It happens throughout the day not just at night. I hope the doctors has answers too.

[Jesmcd2 CommunityAmbassador in reply to Judi4]

Oh no it wasn't restless leg.. it was caused by one lesions. Brain and leg decided not to work together. I spent all summer in slippers cause tennis shoes were to heavy..

[Judi4 in reply to Jesmcd2]

I'm sorry I misunderstood. That is horrible. Did they do an MRI of your brain and spine? Are you still having trouble?😊

[Jesmcd2 CommunityAmbassador in reply to Judi4]

Yes, that's what started me down the MS path. Now l have mri's done every 6 months. I hope your dr can give you a definite answer.

[Royjr]

Hello judi4, I'm not a doctor but what I've seen and researched about this I keep coming up with "myoclonus". Look it up and see if this is what you going through and talk it over with your neurologist. Beware, the Internet is fantastic source of information but be careful about diagnosing yourself. Good luck

[Royjr in reply to Royjr]

I forgot that Spatiscity causes the same issues and is treated with the medication Baclofin.

[Vlbrown57]

I have similar experience with the shakes and spasms. My husband saw me spasm while asleep with my head and feet touching the bed and the rest of my body arched upwards. He said it reminds him of the girl in the exorcist movie. Baclofen and valium control it. Only have this now on hot nights when meds aren't enough. Ask neurologist about meds.

[Judi4 in reply to Vlbrown57]

@Vlbrown57 I'm sorry you go through that. You made me chuckle with your reference to Linda Blair in the Exorcist. I know it's not funny when you're having an attack. I don't have arching, mine are more like I'm doing full sit- ups to a Jane Fonda exercise video. I hope when I see the MS specialist he'll do something or at least direct me to another doctor for help.😊