What is Sarcoidosis
Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most oft...
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Anybody in PA have a good sarcoids doctor?
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My family doctor wants to send me to a sarcoids clinic. She asked me if anyone on support had any advice and I told her seems I give more advice then I receive. So I'm asking if anyone has a good sarcoid doctor? I'm so sick of pain and need to find doctors that will actually treat the disease--not just say they will to let you down later when they can't fix you! Starting on fentanyl patches in hopes to reduce my pain. The neurological symptoms are getting worse, finding my words is frustrating and I'm dizzy. If someone could please give me some advice I'd appreciate it...
Posted on 05/07/09, 09:05 pm |
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Go to inspire.com and look for the sarcoidosis group.
Those folks know the doctors better than anyone. 
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McQuillen
I was dx'd in May and was put in touch with Dr. Deborah Stahlnecker of St. Luke's Pulmonology Associates in Bethlehem, PA. She and Dr. Nicole Grey, who specialized in sarc in Virginia, are phenomenal. Dr. Stahlnecker is coordinating my care with the cardiologist, neurologist, hematologist and gastroenterologist. My family doc, who is also part of the St. Luke's Heath Network, put me in touch with her in the nick of time. She saw me on 8/26 and noticed an irregular heartbeat from the EKG I had on 8/11 in the ER. She immediately made an appointment with St. Luke's Cardiology Associates, Dr. Darren Traub, across the street. He is an arrhythmia specialist. I saw him the next day, 8/27, and he said I was going into A/V block, meaning that my ventricles weren't getting the signal to beat the lower half of my heart. He wanted me in the hospital that evening, but I said that since my father had passed away the night before, I'd have to wait until the funeral on Saturday, 8/29. He told me to admit myself immediately after the funeral, which I did. The connected a heart monitor to me and at 7 the next morning, Dr. Potash, who is Dr. Traub's associate, came in with the printout of the heart monitor...I was now in FULL A/V block and by 8:30, they had a temporary pacemaker installed to keep me alive! On Monday morning, 8/31, Dr. Potash installed the ICD, pacemaker/defibrillator combo and I feel great now...nearly 6 weeks afterward. I don't know where in PA you are, but if you can get in to see these doctors...by all means do so! They literally saved my life. Todd
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