Hello! I have a question that I hope someone has some insight into. First of all, I was diagnosed with Juvenile Myoclonic Epilepsy in November of 1999. I have had the myoclonic "jerks" since I was 15 years old but never diagnosed until I had the grand mal seizure until 1999 when I had one grand mal after drinking too much the night before and not sleeping. I was taken to the ER that day, and had an MRI done. The neurologist took the results of the MRI and after seeing me, diagnosed me with this and put me on Dilantin. Everything was fine until I moved last summer about 50 miles away and wanted to switch to a closer doctor. This doctor first wanted me to do an EEG in the office, then they called and said it was inconclusive and I had to do an at-home 72-hour EEG (which was pure torture) with 16 electrodes hooked to my head. Then they called me last week saying that the EEG showed abnormal activity but it was inconclusive also and they wanted to check me into the hospital from 2-5 days, withdraw my medicine and videotape me having a seizure. My question is this... has anyone else here had to go through this and doesn't this sound a little excessive, especially if I have been diagnosed and have it very well under control. HELP!!

Thanks,
Dianna S. (diananrs23@yahoo.com)

diannars,
Yes, I have been through this testing, twice. As I was a surgery candidate. It is called intensive EEG monitoring. Yes it was a bore. I stayed 2 weeks at each shot. No meds,sitting in bed waiting. But they got what they wanted. They found the focal point. This is the point of the test. It is kind of extensive. Its great it is under control for you but it might just be worth just to find out where they are coming from. And it is painless. Good luck! Johnna

I don't completely understand why they would want to do this if your seizures are under control on medication. Do you have past EEG results from your other doctor that they could send him? Although, I realize that EEG results can change your seizures are controlled. Did they find any abnormalities in your last EEG's the other doctor did? Yes, to me it does seem a little excessive, especially since your seizures are controlled by meds. I have a brother-in-law that started having seizures of unknown cause at the age of 16. His EEG is normal. He has been able to control them (less than one a year) with medication since. He's 25 now. You also sound similar to him that if he stays up all night, or even up into the night and/or plays lots of video games he will have a seizure, meds or not. I would just definately ask your doctor exactly WHY he feels these tests need to be done if you've already gotten a doctor that has done them, diagnosed you and has your seizures under control. Good Luck!

P.S. My son also has seizures and from what I understand unless your seizures change a new EEG is not necessary.

[This message has been edited by eweejoe (edited 04-06-2001).]