Wegs Doc needed, headed to to Cleveland

[acollins]

Good morning ya'll.

I am not writing on behalf of my self but for my younger cousin who is in his early 20's and has been told he potentially has Wegs by biopsy.

In a nutshell he has been getting sick in the past two years..Basically the docs in Baton Rouge don't know what is going on despite two years of tests. It started fatigue, chest pain, cough. He had pleuritis and the CXR was insanely abnormal. Pulm thought sarcoid (due to presentation and a nasal bx---but lung biopsy was not felt to be needed because diagnosis was "clear") but now he has had hematuria (somehow unexplained by work up) lower extremity bruising, skin rashes, weight loss, chest pain with hilar LAD and lord know what elseand two weeks ago had severe pain in a testicle. Of course he had a US and they told him it looked like advanced testicular cancer. Had orchectomy and 8 days later the path comes back possibly wegners granulomatosis. But they don't know..they have consulted and talked with path and heme onc and basically the pulm and urologist have no idea what to do. He tried to get appt at Mayo --but could only get it moved up till July. He is flying to Cleveland Sunday just to see if he can get in somehow. He has not tried to make appt because he is afraid of getting waitlisted and sx are getting worse quick. He has not been given a rheum where he lives (WTH?!)

I am in healthcare, and don't live close. They were advised by a family friend who is MD to show up at the ED at the hospital and just show the triage nurse his legs which no one seem to have figured out and try to get him admitted for a few days for work up/testing. I tought this sounded crazy at frirst but the more I think about it seems more and more reasonable!

Thoughts? Are we crazy? Impatient? I think my fam is fed up with local docs and at wits end.

[Pete]

I see Dr Alexandra Villa Forte at Cleveland Clinic. She's excellent. Some others on here see Dr Carol Langford, who is also excellent. When I saw Dr Villa Forte this past Wednesday, she said she was required to keep some time available for new patients each day, so I hope your cousin is seen quickly.

Good luck and let us know what happens.