Cannot figure out what to do next

**windchime** · 02-08-2014, 11:56 AM

Debra C I have a very knowledgeable Rheumy here, but she wants to refer me to an academic center for evaluation. That is why I was checking out the online second opinion. Save me the physical trip and they don't do much with you in the flesh anyway. At least that's been my experience. I could still go to Mayo in Jax, but I don't know the rep of the docs there. I'll figure something out.

**annekat** · 02-08-2014, 03:30 PM

Deb, Johns Hopkins sounds good. One of our longtime members, Sangye, who has not been very active on the forum lately, and who knows a heck of a lot about WG and other health issues, goes to Johns Hopkins for her treatment and thinks very highly of the doctors and the vasculitis treatment center there. Her WG doc is Dr. Seo.

**Debbie C** · 02-08-2014, 03:40 PM

Yea Deb ,you should see if you can get into see him. He is supposed to be one of the best.

**annekat** · 02-08-2014, 03:44 PM

I believe his full name is Dr. Philip Seo. You might find something by googling him and also if you search this site you'll find mention of him by Sangye and probably others.

**debhaz22** · 02-08-2014, 03:55 PM

Ok, but don't they first have to agree to see me? Can I put in the fax that is like to be seen by him? Not sure how JH works, it's sounds like if you go you get see by more of a team which might be good in my case since no one really knows what this is.

**annekat** · 02-08-2014, 04:00 PM

I imagine any doc or team of docs there would be good. You could send a Private Message to Sangye and ask her how you should proceed if you want to see Dr. Seo. She might have other names to recommend, too. She wouldn't mind, she is a very helpful person, likes being helpful, and might remember you depending on when you joined, but even if she doesn't, you can tell her I thought it would be OK.
PS, no one knows why when we type Dr. Seo's name on here, it gets that funny line under it. I see it didn't happen one of the times. Weird.

**mishb** · 02-08-2014, 05:09 PM

Originally Posted by annekat

PS, no one knows why when we type Dr. Seo's name on here, it gets that funny line under it. I see it didn't happen one of the times. Weird.

It's because the search engine for this site is vBSEO - you can see it at the bottom of your screen

**Alysia** · 02-08-2014, 09:33 PM

Originally Posted by debhaz22

I finally did get a call back from Villa Forte couple weeks ago and she said to come back to be re-evaluated. I don't think she believes I have WG, and I pray I don't, so I feel like I'm being a bother to her, or that's the impression I'm getting from her. I know she is a wonderful Dr. My Dr's here were upset that she didn't do more testing...when I was there in Sept. I have nodules in my lungs (from CT), my asthma was uncontrolled (her words) and yet she didn't think it was necessary to see a Pulmonologist there. ????

maybe it is not the time for jokes, but can you tell the difference between a doc and God ? God doesn't think he is a doc....
don't give up Deb. with all respect to dr. VF, that she is wrong.
find yourself a doc who is willing to listen, to research, to get advice from others, to change his mind and appologize for that.
please continue to update. we love you and hold you all the way

**Alysia** · 02-08-2014, 09:34 PM

Originally Posted by windchime

. I feel your frustration and I'm there myself right now. Came home from the Rheumy on Tues and cried I was so frustrated. Unfortunately that doesn't get me very far. So I too am trying to figure out my next move before I see the Pulmy on Wed. .

what's happened Cindy ?