Chicago area anyone? recommendations questions etc.

[Cubby]

Anyone here being treated for Weg's in the Chicago area? (Is weg's an ok abbreviation?)

Hoping to find some friendly advice and support for treatment the Chicago area. regarding specialists and what to ask, look for etc.

Advise and opinion is welcome and appreciated.

thank you!

Cubby

[JanW]

Check out Front Page | Vasculitis Foundation. Wealth of good information plus names of all the specialists in the U.S. and beyond. Closest vasculitis center to you must be Mayo Clinic in Rochester, which, ironically, is where the power of predisone was first discovered.

[julia]

Hello Cubby,

I live north of Chicago. My Rhuemotologist is at Northwestern. When first diagnosed I was given referrals to both Rush and Northwestern. Northwestern was more convienent. My Doctor is o.k., The student Dr. working with him is great.. My nephrologist is wonderful and has had other wegs patients but she said she does not want to be the lead Dr. in my treatment.

My plan is to go to Cleveland Clinic at some point. Perhaps this fall.

I wish the best for your friend.

[JanW]

Yes, a rheumatologist should be the quarterback on the team and take the lead. That's the standard of care in the U.S. at least. There's too much medication involved to trust it to another subspecialists, especially when people frequently have more than one involved (e.g. nephrologist and ENT).

[Cubby]

Thank you Julia and Jan.

I am looking into Northwestern now even though that is a bit further for us. We are far west of Chicago....

I also found an online 'electric' second opinion consult info from Cleveland Clinic, thanks to one of my fellow 'sleuths'. If one can get their medical records on a disc to send for a second opinion.

Request Services


We had trouble at UIC with faxing records so not sure how well this would work but I think it is good to know.

[elephant]

I highly recommend going to Mayo or Cleveland Clinic.

[Happy Camper]

I got a second opinion from a Dr. Pope out of northwestern. He seemed very good. But I did end up driving to Cleveland to see Dr. Langford. It only took 5hours not too bad. I left at 5am and was back at 11pm that night.
Now Dr. Langford will lead my care and I'll also be managed at home from my local Dr.-who is also very good and literally probably saved my life. I live on the south suburbs of chicago.

[elephant]

Glad it worked out for you Happy Camper, re- seeing Dr Langford. Driving 5 hours is not so bad, when did you go?

[Sangye]

WHOOYA!!! I can officially take you off my Nag List, Happy Camper. I'm so relieved when someone on here gets to a great doc.

[Happy Camper]

Elephant- I was diagnosed on June 22nd at my local hospital and they discharged me on June 23rd. My appt. was then in Cleveland the next day. I figure better waste no time after reading about Wegener's and hopefully get it right the 1st time. LOL. I have my CTscan of my lungs on August 9th, then see Dr. Langford on August 12th.

Me and my husband said we should just move to Cleveland. My husband has Wolfe Parkinsons White, which is a congential heart defect, and after 2 unsuccessful EPS/Ablations at our local hospital we ended up at the Cleveland heart clinic. They did the procedure and so far so good. THat was 3yrs ago. I'm a heart nurse at our local hospital so my husband was a pt. on our floor. It was weird. And then when I was in the hospital last month I also ended up as a patient on my floor. What a strange experience. I was sitting in the nurses station in hospital gown/ with chest tubes in. All my co-workers were great and really helped me get through a difficult diagnosis.