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Dealing with inclusion body myositis: Want to connect with others
Bones, Joints & Muscles | Last Active: Jan 26, 2024 | Replies (19)Comment receiving replies
I’m looking to connect with others who are dealing with this incurable disease. I’ve been combating this horrific disease for 10 yrs. I’d love to hear about your plight.
Replies to "I’m looking to connect with others who are dealing with this incurable disease. I’ve been combating..."
@duckski44 Welcome to Mayo Clinic Connect! I saw that you pasted similar discussions in other places. That’s just fine. The more exposure, the better! I put this link here so you can find groups based on what the
https://connect.mayoclinic.org/group/autoimmune-diseases/
Members posted.
You sound like you are having a very bad time. And you’ve made it for 10 years! What are your ‘keys’ to success? I’m not trying to be snarky here, but you’ve done well! We’ll let other members give their 2 cents worth.
The blood test for me showed positive for anti- cN1A. It was also confirmed by a biopsy sent to Mayo
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I have not been diagnosed but feel like that's what I probably have.
Can I ask how you received your diagnosis? I've had every test done except muscle biopsy,