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What to do when doctors won't listen.....

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Epilepsy
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Posted 4/24/2008 5:27 PM (GMT 0)
Someone please give advice.... My best friend was diagnosed with psuedo-seizures in 2003, only because EEG was normal.  Her sister has epilepsy, her brother has a seizure disorder, her father had a brain tumor, that has been removed successfully, but now has seizures.  On April 3, 2008, my friend started having severe seizures that cause her left arm and foot to draw up, her mouth draws, she cannot speak, and every since this one seizure, she has a horrible stuttering problem that she has never had before.  She stutters every few sentences (ictal stuttering).  The seizures have worsened, and for the past week she cannot function, cannot work, is so fatigued , can hardly function at all.  After 2 ambulance rides to emergency room,  and totally blown off and sent home, she feels like she is crazy and helpless to get an answer to what is really going on.
Posted 4/24/2008 10:27 PM (GMT 0)
It sounds like you need a second opinion. Have you seen a neurologist rather than a 'standard' doctor? It sounds like there is something other than epilepsy going on there. Are the symptoms permenant or just in the hours following a seizure?

Posted 4/25/2008 2:09 AM (GMT 0)
I agree, a second opinion is definitely in order. To this day I am wondering if I should let the neurologist who said I had pseudoseizures know that I had brain surgery. Sometimes we know what is best for us and unfortunately it takes time to find the right doctor. I knew I wasn't going to give up. Good thing since in one week I will be 6 months seizure free :-)   Gail
Posted 4/28/2008 8:56 PM (GMT 0)
Thanks Gail, Could you explain, if it's not too personal, what exactly was your problem that lead to surgery?
Posted 5/1/2008 2:05 AM (GMT 0)
I was finally diagnosed with intractable epilepsy. The frequency and intensity of my partial complex seizures was out of control. I had tried so many meds and on high doses too. Once they told me it would only get worse, I knew surgery was the only way to go!
Posted 5/1/2008 2:10 PM (GMT 0)
Thank you for the info. My friend's EEG came back abnormal, she saw Neuro this morning, and now they want a sleep deprived EEG. She is hardly even functioning, cannot work, cannot drive. She is not driving because she was told not to, she is not driving because she knows the danger. She is very weak, for instance, just folding some laundry completely takes her energy for hours. She has horrible stuttering that she never had until 4/3/2008. She has constant headache, and intermittent seizures daily, but has had no seizures in front of any of the doctors. I feel so helpless for her. So far no medication has been offered. The EEG states bitemporal sharp and slow waves, more prominent on the right side. Just yesterday the seizure started with crying for no reason.....
It is very hard to see your best friend go through this.... She has had symptoms and seizures since 2003, labeled as psuedo-seizures. It just seems like she's slipped through the medical cracks for 5 years. Thanks for any input.... Shortyone
Posted 5/1/2008 3:37 PM (GMT 0)

If they want to put her in for the 3-4 day EEG, it will be the best test as far as epilepsy she can have, in my opinion. 

 I was there for four days and it was extremely boring; you are videoed and monitored 24-7. My cord was long enough that I could go to the bathroom in privacy, but that was it.

But this was where they were able to capture my seizures, so it is definitely worth it if they want her to do that.

For the first couple of days they had me hooked up to a heart monitor simply because I have a very small heart murmur that I don't even realize is there.  Because I have severe asthma, they had an IV tube inserted.  Your friend should not have to have all of this. 

Every time I got out of bed I would pull some wire out and the blasted beeping would start and a nurse would come running in.  I finally begged them to call my doctor and tell him that my heart murmur was absolutely no big deal and  to please let them at least unhook that one machine.  Then I had one less set of wires.  I had gotten to where I was using very foul language every time I got up and pulled wires out.  At first I forgot I was on TV, then it just didn't matter.  I was 55 at the time and I felt I had earned the right to say what I wanted to under those circumstances.  confused

After it was all over, I was so glad I had this four day test done.  It doesn't hurt at all.  It is like the worst hair day you can ever imagine.  But, if they want to put your friend in th hospital for this test, please encourage her to do so.

Take care!

Carla

                                                                                                                                                                        

Posted 5/2/2008 12:35 PM (GMT 0)

Hiya,

Carla is spot on in my opinion. The multi-day vEEG's are great because you are much more likely to catch a seizure. Also they can try different things to try and stimulate a seizure if they wish. (And the patient agrees of course!). As Carla has said, they are not painful in any way... not much different to normal EEG's in that respect. The worst thing is probably getting the glue out of your hair at the end. It can be time consuming but done worry, your friend wont need to go bald! lol

Darren

Posted 5/4/2008 12:54 PM (GMT 0)

I also agree with Carla and I too would like to suggest you encourage your friend to agree to the sleep deprived EEG. While she is in the hospital the staff will also be able to document her other problems and will observe first hand her difficulty in functioning.

I am so sorry to hear your friend is going through this but how lucky she is to have you as her support person and her friend.

Take care and keep posting.
Kitt 

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