Rush Hospital in Chicago is a CoE. They do a neuro exam and psych eval to look for any symptoms first. During the psych eval the psychiatrist asked a lot of questions regarding depression, suicide etc.. They're trying to asses how you would handle a positive result. Both doctors were pretty adamant about having my wife present for the results. We met again 4 weeks latter (took a while due to scheduling conflicts) to review the results. Both doctors and councelors were available after the test if I felt they were needed.

They also stressed getting things in order that a positive test would effect - Life insurance, long term care insurance etc..

I DO reccommend having someone with you when you get the results. Not being married - I went with a very good friend.

I was glad he was there to drive me back to his place, afterwards. I could not have driven!

He then drove my back to my place - once I felt ready. Friends are a treasure!

thank you all for your support and words of wisdom. i have tears in my eyes as a read through your posts.
andersmar

Good luck and God Bless you.

God Bless, Pray for a cure.

Just Me.

Hello all...

I really want to be tested, but I'm not sure my family could handle the news if it was bad. Also, I don't even know where to start. I talked to a regular MD and he said that since I have no health insurance and am only in my 20's, it will be impossible to be tested. He told me "not to bother" and that it "wasn't really important to where (I am) in (my) life". So I have no idea what to do or where to start.

I read in teh New York Times about the girl who was just a bit younger than me that tested positive...and then she was on The View. I don't watch the show, but I did tape it that day. It brought HD out to a new audience. I did like that.

I know I didn't answer your question...I may have just compounded it. Sorry... Solor me confused!!

Melissa

Melissa-

I'm only in my early twenties and I don't have any health insurance and I had no problems... Infact since I didn't have any insurance it automatically went to a sliding pay scale type of a thing. I think all in all it would have costed me about 400.00. I never went through with the whole process out of fear of the results,... so I assumed I wasn't ready. Check out center of excellence...they can answer your questions to regarding direct information about testing at a specific locale. As regards to the MD's comment... unless he's a mind-reader... then I think you would be the only one to determine if you were ready to test at the point you are in your life.
As DB says: All my best!
ZACH

Well i did it. should know something next month

mpeters, zach is right. it may be just as easy to be tested not having insurance.

and yes, a center of excellence is the way to go. they're so up on everything about HD.

thanks to everyone for your words of encouragement.

That was a tuff step to make. I truly hope that your results are negative. Thinking about you...

You know all of our fingers will be crossed for you!

Anders - good luck. Please keep us posted.

Melissa - Katie posts on here sometimes. I had the honor or meeting her last week at a local fund raiser and she is truly as amazing in person as she is on paper. If you want to get tested - find a Center of Excellence in your area and you should be able to get through them. Your dr has no right to tell you whether you should test or not based on your age. It is a personal decision and everyone makes their own choices for their own reasons.

Stacy-NJ

Thanks everybody for the advice. I hope there's a COE in Tulsa or someplace nearby.

There was a post on this thread earlier about Rush hospital in Chicago. Excellent place. That was where all mom's doctors were. I'm not sure if Dr. Camella is still up there or not; but Dr. Aimie St. Pierre is and she's really wonderful. Sensitive to patient's needs, caring and she knows her stuff!!

I'll look on the main website for a CoE in my area.

~M~

Andersmar,

This may be a comforting thought. Regardless of the outcome of the test, you'll never have to go through this again.

Will

Will, you are so right. lol there's always an upside. It was good to be able to joke around with the folks at Baylor and University of Texas. I did tell them about your story and that, positive or negative, I think I will adopt your recipe for quality of life .

anders

Best of luck Anders, i will have my fingers crossed for you x

Anders I believe I hve said this already, but my thoughts are with you and I am wishing you the very best---

And Will, that is a great way of looking at it, I loved it so much I smiled and laughed at its realitiy LOL

thanks