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Sjogren's Syndrome Support

John Hopkins and Mayo Clinic

I was diagnosed with Sjögrens and PBC early June. I have seen 3 rheumatologist 2 ENT’s, my primary and 3 PA’s in her office.
I have appointments at both clinics. Has anyone went to John Hopkins or Mayo Clinic? If so was it beneficial? Did they offer any new technology or medications for Sjögrens? I’m not sure which Clinic I should visit. I will be flying from Colorado and don’t want to waste time and money if they can’t offer me something more than what has been given to me already.

I wish I could offer some insight. As a NY’er I have heard that they set up a department a fee years ago solely to study Sjogrens. I truly hope they are helpful. Have you had a chance to read any of the articles? It may give you an idea of they are matching what you are looking for?

Can you ask for a chart review to begin with, so that you get a better idea of what they might be able to offer you?

Do you want to share what you’re doing now in order to manage/treat, so that we can have a better picture of at least what you’re doing on the Sjogren’s end? Also, who are you seeing for the PBC? (What type of doctor?)

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Has anyone looked at the Cleveland Clinic as well?

I didn’t know there was one there. Does it specialize in SS?