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What tests prior?

Posted: Mon Nov 08, 2010 6:03 am
by msmything
Hi everyone!
It looks as if I am accepted by Rush, for a mid january start.

I have 2 questions actually.

First is what insurance covers without a fight? We are in open enrollment right now.

And, what tests are done prior to starting? I want to know what may potentially kick me out. I'm jsu about to turn 54 (next week!) and I have some minor health issues that I hope aren't too big for their purposes.

I'm assuming a whole battery of blood work.

Can anyone give me the lowdown from a 'been there' POV?

Posted: Mon Nov 08, 2010 7:44 am
by dlb
So exciting - will be watching for your follow-up report. Best Wishes!

Posted: Mon Nov 08, 2010 12:11 pm
by msmything
I am excited!! I wish I was more computer literate and I could embed a scype report, so everyone can be there with me.

I was reading the data the doc had posted on the wall, and all of the study participants were young...maybe I'm rounding out his demographics...

I wanna know what happens 1st though.........!!!!

Posted: Mon Nov 08, 2010 2:58 pm
by Lyon
oo

Posted: Tue Nov 16, 2010 8:25 pm
by Axiom
Chris and Mel both had the treatment at Johns Hopkins.

Check out this link:

http://rebootingkathy.blogspot.com/

(or do a search for Reebooting Kathy if it doesn't link properly)

It's a blog written by a patient who had the treatment at Rush. She shares lots of very detailed info, and she even has a fairly recent update.

This section of the site has been very quiet, but I hope you'll keep posting about your experiences. Good luck to you!

Posted: Wed Nov 24, 2010 4:31 am
by msmything
Thank you axiom...and Bob!

I just had a round of IVSM, and the pain level I had been at had been completely out of control, now is bearly bearable!!
Howeevr, I thought I was superwoman, and worked 3 days in a row..

I'M NOT SUPERWOMAN..

Posted: Fri Nov 26, 2010 4:11 pm
by criptastic
I had HiCy earlier this month, tho not at Rush. Prior I had a list of about 20 different blood tests (lots of viral studies) and a Muga scan for my heart.

Feel free to ask any questions.

Criptastic

Posted: Sat Jan 01, 2011 9:37 pm
by msmything
OK, I found out i will be having an MRI, chest x-ray, EKG and echocardiogram, lots 0 labs, lots of baselines with a hemotologist, neuropsych studies, and establishment of EDSS score..

I keep in touch with all of my Docs by fax. I have found that messages left with office staff tend to get garbled. (anyone else?)

I faxed Dr. Balabanov's office and HE called me back later that day. It was a question e could easily have had one of his minions call me back with an answer. I was delighted that he took the time to touch base with me. I also got a call from the program coordinator just to let me know that I am still on target for inclusion, but that I would hear nothing until after the holiday season. I thought that was a nice touch too...

Posted: Thu Jan 06, 2011 9:09 am
by Looking88
Hello criptastic, can I ask where you got your HiCy treatment? So far I know of JH and Rush. Are there other options?

Thank you.

Posted: Fri Jan 07, 2011 8:32 am
by criptastic
UTSW in Dallas.

Posted: Fri Jan 07, 2011 11:12 am
by Looking88
Thank you. I hope your treatment is a great success.

Posted: Sun Jan 09, 2011 1:18 pm
by msmything
Hello Criptastic, I echo the sentiment that you are the exception, and that the HiC works really well for you.
Do you mind if I ask what auto immune you have? I have MS, but 2 others as well, and I hope that here will be magic for all 3.
I've got pemphigus, and am being tested for lupus right now, I've got the lovely face rash, kinda racoon like....my blood is off somewhere special.

Please let us know your outcome...I know that JH did aplastic anemia some years back with HiC,

Posted: Mon Jan 10, 2011 7:33 am
by criptastic
I have myasthenia gravis.