Hi,

I was wondering if any of you have a neurologist or physician that is very familiar with HD and very helpful with this disease.

We have one that is supposed to be good 150 miles away but the times we have seen him he keeps referring to my husband's illness as Parkinsons even I keep telling him he has HD. It just makes me wonder. He replaced one who was very good but moved out of the country.

Also, we have seen one who is 7 hours away but isn't totally into HD.

I thought if there is one that is very much into HD I would like to try to get my husband to him/her if possible.

Thank you.

Where do you live????

I live in Nebraska but would drive anywhere to get a good neuro or dr good and very familiar with HD.
Thanks

I think the U of Iowa has a HD center of excellence. Would that be far? I think they have a great reputation (Dr. Jane Paulson has had articles referenced/posted on here..not sure if she is seeing patients or just doing research but I'd think they'd have someone there good). The Twin Cities is a big place and maybe they'd have someone good, but I don't know. I would want to RUN from your other doctor who doesn't even refer to HD by its proper name...seems kind of weird to me.

The University of Iowa's HD Center of Excellence is outstanding. They have care coordinated through the departments of neurology and psychiatry and also have lots of opportunities to be involved in various studies. The practitioners are specialists in Huntington's and with Dr. Paulsen's lab also at the U of I, there is cutting-edge research being performed. Check out the general link at www.uihealthcare.com then search for Huntington's. You will get several links with lots of information. Good luck!

Thank all of you for your replies.

I actually called Iowa City and have scheduled an appt in March. They tried to refer me to the dr 2 1/2 hours from here who they said they have heard is very good. He is the same one who keeps referring to "Parkinsons" rather than HD at our one appt. I am definitely going to make the Iowa City appt even it is 8 to 8 1/2 hours away. It would be worth it to find a good Center.

Thanks to all of you for your help. I appreciate it so very much.

I don't know a doc in your area but I would certainly be skeptical of a doc who keeps calling it Parkinsons! Good luck.

Hey .. save up and make it a a mini vacation... we all need a change of scenery sometimes anyway.