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Inclusion body myositis

Posted by duckski44 @duckski44, Jul 7 9:25am

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

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cheryl46 | @cheryl46 | Jul 8 9:59pm

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,

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 8 11:36pm

@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/?search=Inclusion+body+myositis#discussion-listview
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.

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victordc1 | @victordc1 | Aug 15 4:09pm
In reply to @cheryl46 "I have not been diagnosed but feel like that's what I probably have. Can I ask..." + (show)
Profile picture for cheryl46 @cheryl46

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,

Jump to this post

Hello,
Doctor suspected i had IBM, also had everytest done, finally doctor ordered muscle biopsy,
and a blood test and it was confirmed.

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1 reply
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fairn | @fairn | Aug 16 11:37am
In reply to @victordc1 "Hello, Doctor suspected i had IBM, also had everytest done, finally doctor ordered muscle biopsy, and..." + (show)
Profile picture for victordc1 @victordc1

Hello,
Doctor suspected i had IBM, also had everytest done, finally doctor ordered muscle biopsy,
and a blood test and it was confirmed.

Jump to this post

I would be interested to know which blood test showed positive for it? Thanks!

REPLY
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mikej33 | @mikej33 | Aug 17 8:26am

The blood test for me showed positive for anti- cN1A. It was also confirmed by a biopsy sent to Mayo

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