← Return to Antisynthetase Syndrome: Anyone else?

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nancykay1888 (@nancykay1888)

Antisynthetase Syndrome: Anyone else?

Autoimmune Diseases | Last Active: Dec 12, 2021 | Replies (31)

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@johnbishop

Hello @allie7764, Welcome to Connect and thank you for sharing the details of your journey with this rare disease. Like you mentioned, it really does help others to read these posts and know that they are not alone when battling these types of conditions. I know it can be scary when there is so much that is not known. You mentioned that you are heading back to Mayo in a week or so for more appointments, tests and hopefully answers.

There is a site with some tools to help you plan your conversation with your doctors and care team that seems like it might be helpful for you and others – https://patientrevolution.org/visit-tools

Do you mind sharing what questions you would like to get answered?

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Replies to "Hello @allie7764, Welcome to Connect and thank you for sharing the details of your journey with..."

Hi @johnbishop, thank you for sending the link for the site with information about how to prepare for appointments with my care team. Most of my questions that I'm hoping to have answered revolve around my potential new diagnosis of ANCA vasculitis, as I know very little about this disease, its prognosis, and what it may mean in relation to my anti-synthetase diagnosis. I do know that the vasculitis can affect kidneys and lungs, and I am wondering how this might affect my lung function in the future, or if it may have already caused irreversible damage when the hemorrhaging occurred last month. The process of diagnosing the vasculitis has been ambiguous and unclear so far, although I had a kidney biopsy done in my home town last month and will be curious about how the Mayo doctors interpret those results. Thanks again for reaching out and sharing the link. I will definitely use that resource next week when meeting with my doctors at Mayo.

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