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This is Pete. My fiance Mitchie has just been diagnosed with Autoimmune Retinopathy. We are terrified to say the least. After seeing several retina specialist, blood test, complete workup MRI with contrast to eliminate MS the final diagnosis has arrived.We Are told that its usually from colon cancer in women at her age group 55. From my research its an extremely rare disease. Can anyone please chime in on what we are to expect in the future?
Replies to "This is Pete. My fiance Mitchie has just been diagnosed with Autoimmune Retinopathy. We are terrified..."
Hi Pete @mitchieandpete, I would like to add my welcome to Connect along with @lisalucier and other members. Thank you for being an advocate for your fiance. I have no experience with autoimmune retinopathy but found some articles that may provide some information for you if you have not already seen them.
Diagnosis and Management of Autoimmune Retinopathy
-- https://www.aao.org/eyenet/article/diagnosis-and-management-of-autoimmune-retinopathy
Immune Cell Infiltration Into the Eye Is Controlled by IL-10 in Recoverin-Induced Autoimmune Retinopathy
-- https://pubmed.ncbi.nlm.nih.gov/30635390-immune-cell-infiltration-into-the-eye-is-controlled-by-il-10-in-recoverin-induced-autoimmune-retinopathy/
Non-paraneoplastic autoimmune retinopathy: multimodal testing characteristics of 13 cases
-- https://joii-journal.springeropen.com/articles/10.1186/s12348-019-0171-1
If you are not familiar with Google Scholar (https://scholar.google.com/), it's a great tool for finding the latest medical research type of information. You can sort the search results by year. Hoping another member with experience with autoimmune retinopathy can provide you with some more information.
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Hello, @mitchieandpete. Welcome to Mayo Clinic Connect. Sounds as though you are your fiance's advocate with her autoimmune retinopathy, which is great. It also appears that you two have been very thorough in consulting with specialists to get a diagnosis for her.
Hoping that @imallears @cehunt57 @pedie and @johnbishop will have some input for you on what to expect for the future with this disease.
Will she be undergoing screening for colon cancer, then? What would you say is most terrifying about the autoimmune retinopathy diagnosis for you two right now?