Best Clinics in US for Sarcoidosis?

Recently diagnosed, but looking out for the future. Has anyone had good experiences with Sarcoid clinics here in the US. I was originally diagnosed in Boston over 30yrs ago, lungs, no problems until recently. Skin biopsy show sarcoid. Lower legs, not topical at all. Lungs clear, eyes clear, so far just skin. I live in Tucson, AZ, so I noticed Denver has a clinic that is not that far from here. Going back to Boston so could also get a second opinion when there is August. Would appreciate any feedback anyone may have had with clinics they have gone to.

Thank you,
Zoe

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National Jewish Hospital in Denver has a Sarcoid center and great reputation. I haven't had much luck in Boston finding someone who is Sarc-savy for anything beyond basic pulmonary sarc. I have cardiac and neurologic issues, will be going to the Cleveland Clinic Sarc center in July for a consult. Good luck.

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althou not thoroughly thrilled at the moment w/cleve. clinic in ohio,something must be said when people all over the world go to the sarcs clinic. i met people from countries i never heard of before,there.

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Hello Islandgal,

Dr Jeffrey Berman was the doctor in Boston who diagnosed me over 30yrs ago. I found him very good. Although at that time it was only pulmonary sarc. He is at Boston Medical Center. Good luck with your visit in Cleveland.




http://www.sarcoid.org/about.htm

Zoe

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I started with Dr. Berman. Liked him enough. Hated Boston Medical Center. My rural ER sent me there when I had a cardiac problem. I was admitted to the cardiac ward and finally checked myself out after two full days of not being seen by a cardiologist. Also did not like that you are always seen first by a "fellow" (specialist in training) who would talk to you, take notes, talk to the doctor who would then talk to you. This information filter was so annoying and time consuming, I gave up. Good luck to you.

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University of Michigan has a sarc clinic run by Dr. Eric White. I have been going to it for the past year and they are excellent.

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It's not a sarcoidosis clinic but there is a doctor in phoenix his name is Dr. Okuda he is hard to get into see because he is the director of the ms program but I see him for my ms/sarcoidosis/nerosarcoid still waiting to get confirmed diagnosis but he is one of the best

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Check out this link for a list of docs:

http://www.sarcoidosisonlinesites.com/dr%20database.htm#na

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nickandcorrie,so i've been thru the pred. the mtx the plaquenil & infusions.so does dr.e white have a different protocal? my dr. WAS from cleve. clinic.

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Sis73.
You mention infusions. What is this? Never heard of it.

Thanks in advance.

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I see Dr. Hamzeh at National Jewish; I get good care (he is conservative on prescriptions) from him and NJ. It does take a little while to get an appointment; I have a lengthy phone interview with a nurse, the a scheduler called back to set an appointment. My impression is NJ wants to make sure they can help as well as get each patient assigned to the proper doctor.

Dr. Hamzeh works well with my other physicians, and I can take any test results with me and avoid double testing- save time and money.
I have little lung involvement, but NJ is a great place if you do- number one research/hospital for respiratory problems in the nation.

Good luck-

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nickand connie,
Just curious. I am waiting for the referral to see Dr White. Is the clinic just for pulmonary or do they get everyone involved. My lungs are stable now but am trying to look into neuro possibly.

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I would say Cleveland Clinic... they have the most patients in it and do the most research... most on here would agree to go there. they are the top. either way its a hard disease and sometimes there isnt help ;(

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I would say Cleveland Clinic... they have the most patients in it and do the most research... most on here would agree to go there. they are the top. either way its a hard disease and sometimes there isnt help ;(

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I would say Cleveland Clinic... they have the most patients in it and do the most research... most on here would agree to go there. they are the top. either way its a hard disease and sometimes there isnt help ;(

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The Cleveland Clinic, for sure. Dr. Parambil absolutely saved my life. They have the most research, some of the best equipment and there all of thier sub-specialists know and study sacoidosis. I have cardiac sarcoidosis and everyone in the cardiac center knew all about it. When it got to my eyes, samething from that specialist. They take sarcoidosis VERY seriously.

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Its a full clinic. Doc White is the lead doc but he has someone in each area of discipline to see you if needed. I have a neurologist and cardiologist through it as well. While it seems most are treated medically in the same way, i found at u of m doctors who listen and care. Theae are things mu former doctors never did. I feel i am in good hands.

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I'm new here; been lurking for a couple of weeks since my sarc seems to be coming out of remission or becoming "active" after 11 years of pretty calm times. So far I've learned a lot on here, but I'm probably still in a little bit of denial mode about it all and perhaps haven't absorbed as much as I should. I've just discovered that the University of Michigan has Dr. White and a sarcoidosis clinic and I'm hoping to get in to see them there. Those that are trying to get in/have been seen - is it a very difficult process to be seen? I have been seeing a Pulmonologist for 13 years so I'm assuming that I'll need a referrel from him. Like I said, I'm still in a bit I'd denial and haven't made the call to U of M yet. Any tips or info that you can share would be super.

Thanks,
Sue

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

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