Seeking Wright (or wrong) Answer of EEGs

[BethU]

I had an EEG (I keep spelling it EEK for some reason ... maybe when I get the report, I will know why :shock: ) yesterday. It was supposed to be a "waking/sleeping" EEG to try to find an explanation for 5 seizures I've had in the last six months, all happening when I was in deep sleep. (The seizures woke me up)

I figured it would be like a sleep study, where you spend the night, but this appt was only for an hour. They wanted me sleep deprived, with only 4 hours sleep the night before, so I figured maybe there is a way to fall asleep fast after the waking test was done. But no ...

Cut to the chase: they didn't want me to sleep ... they only wanted me "tired."

Question 1: is this what constitutes a waking/sleeping EEG ?

Question 2: Anybody know if ALS would show up on an EEG as muscle tension?

The technition said at the end that there was muscle tension all over my body. During the test, she kept yelling R*E*L*A*X you're doing great R*E*L*A*X

I felt completely relaxed, and after 15 years of yoga and meditation, I can relax pretty darn good .... especially with only four hours sleep.

If ALS does show up as muscle tension on an EEG, maybe that would be a diagnosed tool?

Anyway, she said the neuro would be able to "read through" the tension to the other brain activity. I should get a copy of the report next week.

If anybody knows anything about EEGs, would appreciate some feedback. Thanks!

PS ... that is one nasty little test. I'll take an EMG anytime.

 

[olly]

hi beth

i think it was a eeg i had when i first got ill.
they stuck little electrodes to my head and connected to a machine that reads the brain waves,(something like that,it was so long ago)
mine was to determine if my myoclonus episodes was epilepsy.
they said the eeg was ok but then it can be (normal brain waves)when you are not having a episode.
i had unexplained seizures as a baby,one aged 12yrs,one aged 25yrs and one 5yrs ago.
but to be diagnosed,ed with epilepsy you have to have regular seizures.

unless you have a study were they catch the seizure on the eeg i dont think they can say for definate.
i hope yours is ok,you have enough to deal with.

 

[wright]

Hello Beth

Glad to hear that they are trying to get to the bottom of your seizure problems but sorry the test was so uncomfortable for you. Was it because of the sleep deprivation and the preparation of the test, because EEG's are physically painless.

The reason they wanted you tired for the test, is because that is something that can cause a greater manifestation of symptoms (e.g. a way to "trigger" your seizures or at least events that might lead to them). It would not be considered a sleep / wake EEG, though.

The muscle tension the EEG would pick-up would be muscle tension in your scalp, neck, face and maybe upper back and shoulders. The EEG picks-up certain brain waves (e.g. beta and theta waves) that can be "contaminated" by muscle tension . . . but . . . a well trained neuro will be able to sift through it most of the time. It would kind of be like listening to talk radio with lots of static but still being able to decipher what is being said despite that static (the dialogue being the brain waves and the static being the muscle tension). Sometimes, unfortunately, the noise is too great and the test might have to be repeated.

Muscle tension can be caused by a gazillion different things, so measuring muscle tension isn't going to be of much benefit in diagnosing ALS. Muscle tension with ALS can actually be very low depending on the manifestation of UMN symptoms and actually absent in later stages when the muscles have been severely atrophied. Muscle tension can also be measured in a much cheaper and easier way by using EMG with patch electrodes on the muscles instead of needles, as so many on here have experienced with an EMG.

I hope that helps. Keep that wonderful disposition and sense of humor; you are an inspiration and a source of comfort to so many people. Take care.

 

[BethU]

Thanks Wright and Caroline for your helpful responses.

Wright ... I was expecting something painless like an EKG, but the tech scratched hard with what felt like a needle or pin into each square of the cap, which hurt quite a bit. The cap was very tight, and the ear attachments painfully tight. By the time she got through with the stobe lights, I had a stinker of a headache ... but this went away with some Tylenol. I think I'm just turning into a big baby.

And thank you for your kind words.

P.S. ... the techie who performed it ... in a neurologist's office ... had never heard of ALS. :-(

 

[wright]

Beth, I'm just curious

Did you refer to ALS, as ALS or amyotrophic lateral sclerosis or Lou Gehrig's disease or all three when talking to the tech?

 

[rose]

Beth.... are you sure they did the right test?

 

[BethU]

Rose ... I'm positive they did the wrong one. The insurance authorization clearly states "EEG, AWAKE AND ASLEEP," with a code number for the test. I've written to the insurance case manager asking who/what/where can I get the right one performed. My follow-up at UCLA is early March, so would like to have some results to talk to them about. I think the neuro's office should just write off the charges for what they did.

Wright ... I was using my Light/Writer and she clearly could understand the speech, as we carried on a conversation: I referred to "ALS" twice. (She kept asking when I'd had my stroke, and I kept telling her I had ALS.) Then the third time I tried "Lou Gehrig's Disease," and her response was even blanker, if possible.

 

[Zaphoon]

Beth,

I am amazed that this person did not comprehend "ALS" or "Lou Gerhig's disease" and here she is getting ready to perform a test on a person that has it.

I think from now on, any time a neuro sends me out for testing in a diagnostic vein, I'm going to ask if the person knows what and why I am being tested.

It just points out the need for an increased awareness regarding MND (I have to say MND because it encompasses PLS)

Zaphoon

 

[rose]

Absolutely stand your ground! I am so frustrated for you!

Last spring, I too had an imaging place run the wrong test, they even admitted to my doctor that the did not do that test (she ordered there) that it was clearly stated on the prescription, and that they chose to ignore it. and knew at the time that they were not giving me the correct one. She said she will never ever refer another patient there for any testing, so some good did come of it. Plus (see... now you've got me ranting) the test that they DID run, they said in the report that my function was fine, but then when she, and a radiologist read it, it wasn't even ok. It was supposed to be the modified barium swallow study, I was given the standard barium swallow, which is not even close to being a similar test. Even back then, the wrong test showed that I had a delay in my esophagus emptying into my stomach, and it was not interpreted as such. (I actually think the radiologist never read it because he already know they'd screwed up so badly)

I feel so badly that you stayed up getting sleep deprived, and wasted your time going for it, only to have to deal with the inept and clueless!

Go get em!

 

[BethU]

Rose and Kim, this is crazy, crazy, crazy, isn't it? One thing I've learned is keep a copy of EVERYTHING. Usually the clinic or dr.s office keeps the insurance referral I take with me (although they have their own copy), but I scan everything before I go there. This helped last year when I was getting the run around on the MG bloodwork and was able to produce copies of each of the lab referrals. (Had to have blood drawn for the MuSK test three times.)

I plan to make some noise to hopefully get this resolved before March. I still haven't heard the results of my MRI, and don't know where that report was sent ... to UCLA or my PCP. It's out there somewhere, so will have to dig for that, too. :evil:

... and the BiPap, oh the BiPap ! I bought my own chin strap so I could use the nose mask, but even with my jaws closed, my lips don't close any more (atrophy around the lips I think) so still am mouth breathing. I am going to ask my dentist if he can make me an appliance that I could bite gently on, and which would cover my mouth area on the outside. Should be easy if he's at all creative. Famous last words.