Conflicting diagnosis, coping, independence

[morganomics]

Hi everyone, I've had a few struggles with both diagnosis as well as treatment for over a decade. My psychiatrist strongly believes I have temporal lobe epilepsy as the auras I describe though infrequent have qualities I can say temporal lobe epilepsy or simple partials explain. I believe I have epilepsy from my own subjective research, yet it seems every attempt I've made to see a doctor at one of the large university hospitals in Chicago has come up short, though I still believe there is an epileptologist / neurologist that will listen to me. My dream is to fly to the doorstep of one of the many research neurologists such as VS Ramachandran or Oliver Sacks, knowing they would take me seriously and even if TLE isn't it they still wouldn't dismiss me outright and look through the blinds at the snow coming in trying to hurry the appointment along. That being said, I feel miles away from a functional and happy life. I live at my mother's house though I wish to be independent though it seems TLE has wrecked my sleep mood and functioning. I'm trying to see a neurologist at the University of Chicago hospitals at their epilepsy clinic. I feel help is right there 20 miles from my house yet since I don't have health insurance its a mile away. I would take the train to their office at a moment's notice if I was allowed to be treated. I don't know what that treatment would be nor do I know how much better I might feel, but I'm willing to go the distance anywhere and do anything to change my life and return my mind and body to normal. Thanks for listening and I hope the many others like me here feel better soon as well!

 

[Meetz1064]

Wow, what

a place you're in, morganomics! A rock and a hard place is what it sounds like to me. But I'm sure there is hope for you, especially as you seem to be willing to try to find help for yourself. That's a very good thing.

Coping with epilepsy can be a pain, whether it's under control or not. It can affect your independence in so many different ways.

It's a great thing that your psychiatrist thinks that it is TLE--that should be a huge step into getting you in a door somewhere. The insurance thing can be an issue. Are you on any state programs in Indiana? Medicaid/Medicare, etc?

I wish you luck!

Meetz
:rock:

 

[Endless]

Morganomics,

You really have been through the wringer. But you have a strong resolve to do what it takes to get better, and that is going to carry you over all the obsacles.

Is your psychiatrist willing to phone and talk to your chosen new neurologist, and brief him/her about what they think? Also to help you get a sooner appointment? A doc-to-doc call can do wonders.

We're all behind you.