My sister-in-law is getting the run around. She has had symptoms for years with mainly cognitive decline, speech problems all very similiar to her brother . After Mark tested positive last month, she wants to be tested. The neurologist is suggesting that they need to have a "full workup". It seems to me that regardless of the other test results, she needs to have the genetic test and then probably will have an answer and not necessarily need the expensive MRI etc.
I directed them toward the Center of Excellence at Rush but does anyone out there have a suggestion for a physician to see? They live in the suburb of Carol Stream, west of Chicago.
This waiting time when you think you probably have HD but can't move on until the test is done seems like a pretty painful time. It was for us.

Chris Gomez- that's who my husbands uncle saw and was diagnosed through. Think hes at University of Chicago, but don't quote me on that part...
Vicky

Hi,

I go to Dr. Shannon at Rush. She's the one who helped me get tested years ago, and I recently was granted disability, with Dr. Shannon's help.

tellie

I hope you find a dr. soon cause she really needs to find out and get on the proper medication.....my husbands neurologist ordered the genetic test and an MRI also....the MRI is to see if there is any "brain volume loss" that is a direct result from having HD...my husband had a lot of brain volume loss......he seems to be getting so much worse every day...I really hope they do another one pretty soon just to see how it is progressing.
Liz

Thanks everyone. My BIL emailed the social worker at the COE at Rush and she responded quickly with such kindness and support and I know they feel a little less alone because of it.
Our insurance company denied our out of network request to go to the COE in Minneapolis. There isn't one in Wisconsin. Our appointment is on the 29th. I guess I will appeal this but I am getting so tired of all the hassles just trying to get Mark some help and our family some support.