Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

I think it's all over ...

Tue, 12/26/2006 - 06:51
Hi Guys, I'm back. Have been a bit quite latley. Not sure if I belong here any more. Well, I had my 5 hour VEEG and then a 5 day amulatory EEG. Results came back normal. So I am still left with my inital 20 minute EEG that came back irregular. Although, I am now told that this inital test is deemed 'wrong', due to the latest EEG's coming back normal. Mind you, I have predicted the results of all 3 EEG's due to how I felt at the time. WHAT THE HELL DO I DO NOW? Not one question has been answered. I thought at the very least that if they came back normal my Neuro might discuss other options with me, or other possibilities. On my inital visit to my Neuro he said 'We have to get you a formal diagnosis. You can't go on living life like this.' and 'Yes, that sounds like Simple and Partial Complex Siezuires.'. NOW - He doesn't even really want to see me for a follow up appointment. I was told about my last results from his receptionist??? She said he would sent a letter to my GP? Mind you - with all the above, I ammmmm feeling better. Over the last two months I have been on the improve and I am slowly getting back to work etc. So I suppose I shouldn't really complain. Problem is, if this all happens again - when I am bad ... I am really bad - to sick to help myself. So what do you all think? What should I do? Is this right? This CAN'T be right. Please help me.

Comments

Re: I think it's all over ...

Submitted by Donnamrk on Tue, 2007-01-02 - 10:49
Have you ever read Neppe's symptoms of TLE? The Pacific Neuropsychiatric Institute, Neppe was able to demonstrate that the symptom of deja vu commonly regarded as symptomatic of temporal lobe epilepsy indeed had a very special phenomenologic quality in patients with temporal lobe epilepsy. There is a questionaire and it all of the physical symptoms are there. It took 25 years from the time I had the head injury unti I was diagnosed. One doctor told me I could not have blackouts because they did not show up on the EEG. They never do so thank you doctor for not knowing this vital info. Most have slept in that day and not one gave him the notes. How that survey helps.

Re: Re: I think it's all over ...

Submitted by Bedge on Tue, 2007-01-02 - 20:48
Wow! That's really interesting. I have googled it and have had a read. Is the questionaire there for us to fill out or answer? If so, would you be able to send me the link? Thanks. ------------------------------ Peace, Love, Mung Beans

Re: Re: Re: I think it's all over ...

Submitted by Patk on Wed, 2007-01-03 - 11:16
Thanks for the info on the site. Here is the site http://www.pni.org/neuropsychiatry/instruments/inset/inset_short.html The form is quite helpful. Good luck pat

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.