just had a Visually Evoked Response Test, Nerve conduction Study I reacted horribly!

[Tondeleo]

I went to the Cleveland Clinic to see if I really do have a seizure/epilepsy disorder as diagnosed in 2012.  I jerk and twist before falling alseep and all doctors want to do is slap a CPAP on me.  Well, I do it with the CPAP on too.  I also do it when awake which I have been told by 3 docotrs is not possible.  Well, they hooked my brain up with about 50 electrodes and after 3 days told me I did not have seizures or epilepsy.  I did have the severe jerking when they flashed a strobe light in my eyes.  I also cease breathing at this time and that is what scares me the most.  No it is not sleep apnea as I said, I do this awake too.  Before discharge they gave me a flash drive showing that I do this awake too, once sitting in a chair where both legs and arms flew up.  They  had me come back to the clinic for a VER (Visually Evoked Response Test) and a Nerve Conduction study using no needles, just pads on my ankles and wrists and a few electrodes on my head.  The VER which consists of alternating bright black and white squares on a screen you stare at  first made me struggle to stay awake, then it caused my legs to fly up to chair level and my arms to fly up and crash back to the floor.  Sometimes my head would twist to the side causing pain.  They did a hearing test too which also caused me to do this but not as severe.  Then I was given the nerve conduction study which was hell on earth!  My body violently flailed around.  Legs flew up, arms flew up, I twisted at the waist, and then my throat began closing and I was emitting loud gurgling screams.  WHAT THE HECK WAS THAT???  They also did an MRI after that and I could not lie still.  OK I am also supposed to have MS so why did I react this way?  I still hurt!!  The Cleveland Clinic called and they want me to go back and see the sleep doctor, I am at a loss and just want to go back home.

[supermum_ms]

Hi and welcome,

I'm not sure i actually understand why the clinic would be focusing on a sleep disorder being the issue, if you are an MSer hasn't any of the doctors considers stimulus provoked Myoclonic jerks (Myoclonus)?

It could also be Dystonia but it sounds more like Myoclonus to me, we've had a few discussion on medhelp in the past about MS and Myoclonus, it might be worth reading those old threads to see if it rings any bells with you. (search is location top right of the page)

A lot of the MS societies have topic specific articles and there's probably a lot of information worth reading there too.

Hope that helps.......JJ

[Tondeleo]

I neglected to mention that at the end of the tests I felt my throat closing and I yelled LOUD 3 times not from pain but from some kind of response

[supermum_ms]

I'm sorry i honestly don't know what could cause such violent reactions like you've experienced during VEP and nerve conductor tests......it would make sense that these types of testing could potentially trigger epileptic seizure responses but it they've definitely been ruled out, off the top of my head and considering after all these tests their wanting you to be assessed by a sleep specialist, narcalepsy and catalepsy come to mind...

Have you asked your MS treating neurologist to explain what could be going on or why you need to see a sleep specialist?

Hope that helps....JJ