View Full Version : Happy and scared at the same time...
Well, after months and months (and months) of complaining that no one was listening to me I finally decided to go to the medical center in Houston and made an appointment at University of Texas Medical Branch with a neurologist there. Yesterday was my first appointment with her. I left there feeling, for the very first time, that someone was actually paying attention to me! She was honest when she said that she does not believe that seizures (or whatever this is that I am having) is my primary issue but that we need to get it figured out while at the same time we need to find doctors that can help with my other issues.
Soooo... I am going in the hospital on Sun. for testing. I am going to have a 3 day EEG/Video study, a new, high resolution MRI, a lumbar puncture, a 5 hour test to figure out what parts of my brain have been affected by what is going on and whatever else she decides after going through my records. Maybe, just MAYBE, I will have an answer pretty soon. As I told the doctor yesterday I no longer care what the answer is I simply want to know what is wrong with me so I can work on feeling better.
Wish me luck and my thoughts will be with all of you
07-21-2010, 01:44 PM
I so know that feeling of not being taken serious n not being listened too.But so nice to read you had a good appointment.At last soon you will have some answers yaaaaaaaaaaay!! I 'll be thinking of you at the appointments and hope you know we will be with you in spirit....so keep calm and know we care.Let us know when you get the results....hope its good news with some good answers for you.I so feel the same in what you said....i dont care n just want to know whats wrong with me...i hear ya!!
Sending you gentle hugs
07-21-2010, 04:03 PM
Good luck with all your tests and maybe you can finally get some answers and it is good that you found someone who takes you seriously. Love and prayers Bonita
07-21-2010, 05:15 PM
you have a start. to me at this point the safest place is probably the hospital. It's very comforting to have medical staff close by. Extensive testing is always a pain. But also a good way to get an answer; isn't that what you're wanting?
So keep that chin up and think positive thoughts,
Hugs and prayers,
07-21-2010, 09:35 PM
I sure know that feeling of just wanting to know what is going on... Good news or bad knowledge is power, power to do something to help. I thought I was going nuts. I was having so much going on and it was like someone had a rag doll poking a pin in one arm today in the knee the next, taking out my hair the next... so many things I wondered myself if I was loseing it. Even if there is no cure there are medications to try and the hope that one day they'll figure out whats causing our bodies to go haywire. Best Wishes and hopes for an answer for you. Billie
I think anytime we can make forward progress with a possible diagnosis, it's something to be happy about. We all know ourselves pretty well, and we knew, or know that there was, or is something wrong that is causing us to live in pain and in fear of the unknown. We are better off knowing what is causing our symptoms, and not spending sleepless nights speculating and worrying about what sort of terrible disease might be at the root of our problems.
I've had most of the tests you are going to do, and they are for the most part pretty easy, but a little long and boring. Be prepared for a long and monotonous day. The one thing that was uncomfortable for me was the lumbar puncture. The procedure itself isn't too bad, but you need to lay perfectly still as long as possible (I layed still for 2 hrs.) after they are done before getting up, otherwise you'll have a headache worse than a dozen hangovers at once. You'll probably have a bit of soreness in the lower back for a day or two as well.
Good luck, and it's OK to be scared. I know I was before my two big diagnoses. But we're much better off with answers, because answers lead to effective treatments that help us get back some quality of life. Time to stop worrying about the unknown, and get on with a diagnosis, effective treatment, and living your life again.
Thanks to all of you for the kind words. I agree. It is time to find out. Peace, love and pain free days to all
07-22-2010, 08:08 AM
tgal that is wonderful news that you are moving forward. Good luck! I hope to see you have some answers soon.
Well, I just thought I would let everyone know that the tests didn't happen. Turns out that the ward that I need to be on is full and will be until mid august. Guess when I run out of insurance? You guessed it... August 1st. Now I am not sure when/if I will ever be able to find out what is wrong but tomorrow I will start calling the doctor to find out what, if anything, we are going to do now.
Keep your fingers crossed, please
07-25-2010, 01:33 PM
I hope you get in soon with ins coverage. keep us posted.
08-02-2010, 02:41 PM
I have not been on this site long, I wish you luck. As everybody else already said, there is nothing worse than not knowing and always wondering. Its kinda bitter sweet in a way. I hope you have something to give you some sense of knowing and, maybe even relief. Knowledge is power, right?