Dealing with inclusion body myositis: Want to connect with others

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

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

After a year of wrong diagnoses and non-diagnosis, finally got the sad news- inclusive body myositis. (Mayo figured it out immediately . Why not others?)

I’m so sorry it took so long to get a diagnosis and then such difficult news! Since this is probably autoimmune you might find others with similar issues on that group.

I hope you will find good physical therapists and occupational therapists to assist you through any difficulties you might have. Just like doctors, there are really good ones and not so caring ones. I’m not sure what the protocol is for PT, but I wouldn’t hesitate to start early as the therapist may be able to help preserve as much muscle function as possible and/or recruit other muscles to assist those that have weakened.

Thank you. I should have made clearer that it's a friend.

She is doing everything, and resilient, enjoying life.

That’s so great! My granddaughter has a different type of Myositis, and I’m hoping she will be dancing, too! She had been in remission but a recent flare has caused thigh muscle problems.
How’s your friend with balance issues on memantine? On the dementia care group you said she had been in despair, but dancing now? Sounds like they found the right answer!

Thanks. The despair is gone with the returned mobility on Memantine. Things are forward to normal (she sings and plays guitar). I have not inquired if there is alsheimers or any other symptoms. Just happy to have her back.
My myositis friend has great life force and outlook, but her atrophying muscles have het wheelchair bound. She is a talented painter and photographer, and is working at it feverishly ( no pun ). How old is your granddaughter? I hope she rebounds.🙏❤️