We need a physician familiar with Hughes syndrome in Columbus, Ohio, USA. Any docs in the mid-west that anyone knows of? Thanks!

[caroline2]

[jcgc]

I was recently diagnosed by an internist. If you have primary I would get an appointment with a hematologist. I currently have an appointment pending with one for a detailed evaluation.

Columbus is bound to have doctors who can treat you. If you have secondary you may need to see some other specialist. If you aren't happy with anyone you can find there I suspect that the Cleveland Clinic would have someone well versed in this.

[caroline2 in reply to jcgc]

Thanks for your reply. No luck in Columbus, or at Cleveland Clinic. Surprising.

[MaryF Administrator]

Hi there, some USA names on here, for contact.. for places nearer you also. Also a big welcome to you: apsaction.org/

Mary F x

[caroline2 in reply to MaryF]

Thanks! This is a great help.

[GinaD]

I was diagnosed by Dr. John Winkelmann who now practises in Ky across the river from Cinn. ( forgot the name of the town. ). He is a great doc. I switched to a local hematologist here in WV after my disease and doseage stabilized due to the drive time ( 4 hours for me.).

And though my local hematologist is great, there is little cross-disciline understanding here in WV. Now I I drive. 6 hours to Duke to see a rheumatologist and orthopedists who are more familiar with Hughes, so, in hind sight . . .

Gina

[caroline2 in reply to GinaD]

Agreed, there is very little cross-discipline understanding. A lot of "I don't know what to tell you", no one willing to help us find someone that may understand the disease.

We will check out Dr John Winkelmann - Thanks so much!

[Hidden]

Hi I would recommend contacting the Mayo Clinic/Medical Center...they have a great Rheumatology department and conduct research best of luck

[Hidden]

Hi! You can try apsfa.org This is website in America. They do have a list of Doctors by state.