Does anyone have any information/recommendation for sarcoidosis specialist in Oklahoma. I am looking for a new dr. I was seeing my reg. IM doctor, but he referred me to a pulmonologist, that never really helped me and like a lot of other drs. either didn't know what to do for me or didn't believe my symptoms. Any help would be greatly appreciated. The 1st of October I was diagnosed with Bronchitis, 10 days later I was still not getting better and rx another antibiotic and diagnosed with pneumonia, this week the same. Another antibiotic and still had pneumonia. I have been so sick I didn't know whether I was going to make it. I was released from a pulmonologist in May because my breathing was good, not perfect, but good. But I had been noticing that when I went in for my appts. He never checked my lungs, just asked me questions and said OK, see you in 3 months. Nevertheless, he released me in May 09, so my reg IM dr said I needed to make an appointment with pulm. regarding the sarcoid in my lungs. Well, I called for an appointment and the scheduler told me that the Dr released me in May because he no longer accepted my insurance. I was devastated, but it was probably a good thing. So now I need to find someone I can talk to and trust that they are interested in working with me regarding my health issues. Thank you in advance.
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Sarcoidosis Specialist in OK
- By Bdr
- Posted October 28, 2009 at 6:06 pm · 5 replies
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- By EinCO
- Posted October 28, 2009 at 9:32 pm
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I know this is a little far but have you considered national jewish medical center in Denver CO.
They are the top specialist in the country on sarcs and have done wonders for me as I have Cardiac and Pulmunary Sarcs(heart and lung).It would be worth the driveor flight Dr Gottshel is my lung Dr. their and is the leading dr.on sarcs and has a great success in this field.Give them a call and request info from them.
Good Luck
E
- By seaokie
- Posted October 28, 2009 at 10:20 pm
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Hey there,
I'm in OKC and have found a couple of really great docs.
The first is a rheumatologist who was really into sarc. but later he referred me to a pulmonologist is is even more into it.
The pulm's name is William Cook. You have to be referred to him because they don't take many patients. From what the rheumy said and my primary care said, Dr. Cook is the best pulmonologist in town. He told me he goes to annual sarcoid conferences. He's into it! My first visit with him was sooo comprehensive. He checked everything under the sun. He's on his game. You have to get past his RN, Tara, to get to him, so be nice to her. :) I highly recommend getting a referral to see him.
- By Bdr
- Posted October 28, 2009 at 11:54 pm
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Thank you EinCo, I will check them out. Hey Seaokie, I am in Midwest City. Thanks for the info. This is going to sound weird, but when I starting researching for pulm. drs this afternoon, I wrote down Dr. Cook's name and address. He's on NW Expwy behind Baptist. Thank you both and I will follow up with both.
- By Puppytrax1123
- Posted October 31, 2009 at 9:38 pm
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Hey Seaokie,
Who is the rhuematologist you see?
- By seaokie
- Posted November 6, 2009 at 6:06 pm
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Puppytrax1123,
The rheumy is Robert Hynd. He's also very into sarc. When I went to see him the first time he looked so excited to have a sarky after seeing old people with all their aches and pains all day. he pulled his collegues in to see me. Dr. Cook, my pulm, also did the same exact thing.
I started with Dr. Hynd for sarc management, and he actually referred me to Dr. Cook as a pulm to go to. When he heard how thorough Dr. Cook was he said that Dr. Cook was perfect to manage my sarc, since I didn't really have any rheumy issues.
Both of those guys are great. Dr. Cook is very thorough.
I will be losing my insurance coverage and will likely have to get on medicaid. Dr. Cook recommended Dr. Robert McCaffree at the OU HSC, if that happens. Dr. McCaffree is a pulm who is very competent. I used to work for his wife. He's been the chief of staff at the VA and on the state medical board and other stuff.
So there's 3 docs.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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