Anyone had full body convulsions?

[Shiela]

@ Angelpach--No, he didn't say what it might be but suggested that I get another opinion from a neuro in a more metropolis area where they may have had more exposure to a variant. He also suggested that I may have overlapping autoimmune diseases that may be making it difficult for my neuro to be sure about my dx. My neuro is now saying that he is questioning my dx because he doesn't see the typical inflammation in the brain. (Even though I am 55 and more apt to be progressive and I've had many brain stem symptoms and he has told me already that I have cortical, frontal lobe and cerebellar atrophy.).

He also suggested that I see a neuropsychologist. Again, he didn't say why but I had had a lot of company two weeks prior and my husband and I think perhaps I was on sensory overload. Perhaps I need to learn to say 'no' to seeing all the people I want to see--a misfortunate outcome to a fortunate problem.

My neuro is on vacation for about 20 days so I have not been able to contact him about the problem and even when he returns I have to go through the 'nurse that thinks she knows everything and listens to nothing'. I'm sure there will be a lot of cases more serious than mine that will get priority attention and I have no idea when I might be able to see him again. Could be months.

** Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Shiela]

@ rdmc-I didn't have a fever either. It was more like convulsing than shivers. I get Myclonus, or jerking in my hands but it wasn't anything like that either. The only thing that made it stop was my daughter laid on me full body. It was a full body experience. Even my eyes were jumping up and down and my toes were jittering. I had to keep my eyes closed so as not to get sick to my stomach. I've had the 24 hr EEG to see if there were any signs of epileptic seizure but none were found. The vallium calmed them down eventually (I think) or maybe they just stopped on their own after the 8 hours. But I was awake the whole time and remember people talking.

Once before, I froze all over my body and was limp as a rag. Couldn't move a muscle for about 8 hours.

[Shiela]

Thanks for all your responses, comfort and support.

[jumpinjiminy]

'nurse that thinks she knows everything and listens to nothing'.

This made me laugh. One of my docs has one of those and I often wonder if my message ever gets through to the person in charge. I've actually quit trying with that place over the phone because of it, but have to go back every six months for monitoring blood labs.

Sheila, I'm certainly no doctor but think that any of them that I've seen would put a situation like you're experiencing on the priority list. It sounds pretty disturbing.

Not sure if this is helpful in any way, but after seeing the neuro for the odd sleep issues, it sounds like he's suspecting narcolepsy as a complicating factor. It turns out the episodes that make me feel like I've almost fallen over probably are related to the sleep twitches/head buzzing, and both are related to narcolepsy. They both happened to come on around the same time, along with autoimmune flare up.

His explanation made complete sense about there being a disconnect between the awake state and the sleep state. With this disconnect, things that are only supposed to happen during sleep start happening when a person is awake - like sleep paralysis while conscious. The brain is telling the body it's asleep while the mind is awake. Not supposed to happen. Likewise, things that happen when awake start happening during sleep - like twitching during a REM cycle, also not supposed to happen.

The switches are sort of short circuiting or not getting suppressed during the proper state of consciousness, resulting in the two getting mixed up.

This is a university neuroimmunologist I've been seeing. I get the feeling my case is so nebulous, none of the locals want to touch me with a ten-foot pole. I can go see them for a sore throat or shingles outbreak though. Lol.

Having another set of eyes that is used to sorting through the complex combinations of issues might be worthwhile.