Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 It has been very hectic these past few years. In 1995 I had open heart surgery to remove the Atrial Myxoma (the size of an orange) inside of my heart. No doctor would listen to my symptoms. They would look at me after I told the doctor, I feel something inside of my heart. Well, your EKG is normal and you're just nervous, you know the rest--hormonal--a woman! If it wasn't for the echocardiogram and going against what the docs told me (not to see a cardiologist) I wouldn't be here right now. I am wondering how these benign tumors are part of the RP. Yes, I am very scared of this happening again so I see a Cardiologist every 3 months but he doesn't connect with the autoimmune disease part. My Rheumy thinks they are definitely related. BTW, my ear is still large, less red. I know I should be taking prednisone but the Rheumy doesn't want me to start on it yet???? Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 Sharon, Are you on anything at all for the RP? My daughter had an endomitrial Ablation in December and it did not work for her either. Sandy Yes, I am very scared of this happening again so I see a Cardiologist every 3 months but he doesn't connect with the autoimmune disease part. My Rheumy thinks they are definitely related. BTW, my ear is still large, less red. I know I should be taking prednisone but the Rheumy doesn't want me to start on it yet???? Love, Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2002 Report Share Posted March 23, 2002 In a message dated 3/23/02 10:28:37 AM Pacific Standard Time, Lee27a@... writes: << Yes, I am very scared of this happening again so I see a Cardiologist every 3 months but he doesn't connect with the autoimmune disease part. My Rheumy thinks they are definitely related. BTW, my ear is still large, less red. I know I should be taking prednisone but the Rheumy doesn't want me to start on it yet???? >> Sharon, I have valvular heart problems. My cardiologist didn't connect them with RP either. He is a wonderful doctor but just didn't see the connection. I took him Dr. T article and Dr. Hermans on the heart. He finally agreed and that's when he sent me to Stanford. The cardiologist there had never heard of RP, but after testing and reading more, he came to the conclusion that YES it was the cause of my heart problems. That was when he set me up with a Rheumy, ENT and Pulmonary doctors over there. I have and echo done every 3 months and they do a spiral CT to make sure that I'm not developing an aneurysm. Get all the infomation you can and be sure to keep those regular visits. Quote Link to comment Share on other sites More sharing options...
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