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Antisynthetase Syndrome: Anyone else?

Autoimmune Diseases | Last Active: Jul 18, 2023 | Replies (63)

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@jamieray6812

I just read your response to something I posted on here a while back and I’m just so sorry you have to deal with all your dealing with, I was diagnosed almost 2 years ago and I’m terrified of life, I have been searching for a new dr. Someone who really understands this disease because like you said no one really knows much about it, every dr I see I ask if they have ever heard of it and they say no… how did you get into Mayo Clinic, and if you don’t mind me asking… did you get the covid vaccine… I’m terrified to get it because this disease is so rare and no one know how our body will react to it but I don’t know if I’m wrong for not getting it… and it’s hard to find anyone to ask questions… your a warrior and I hope nothing but the best for you thank you so much for sharing your story ❤️

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Replies to "I just read your response to something I posted on here a while back and I’m..."

@jamieray6812 I’m so sorry that I didn’t see your posting earlier. I agree, it is so difficult to find a doctor who understands autoimmune diseases or who has even heard of them. I recently found this article that may be helpful.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
You said that you have been to Mayo Clinic—when was that? Are you starting to look for a new doctor?
My autoimmune disease came on pretty quickly and my husband had to do all the research because i was pretty out-of-it.
I also found this website that talks about antisynthetase syndrome:
https://rarediseases.info.nih.gov/diseases/735/antisynthetase-syndrome
When i was first sick, my brother-in-law sent me all this type of information. I read it and took it to doctor visits!
Good luck and let me know what you learn

Wow Jamie!
You have been through it!
I was diagnosed with AntiSynthetase syndrome in November 20 20. Lung and skin involvement.
I have had three Covid vaccines and one booster. Don’t hesitate to get that vaccine, I caught Covid after two vaccines and I swear it save my life. I had to stop my immunosuppressants ( Myfortis) to fight the Covid. Don’t think I would’ve made it if I hadn’t happened back to it.