Chronic recurrent multifocal osteomyelitis (CRMO): Would like to talk

Posted by montanamike @montanamike, Sep 14 9:01am

My granddaughter has CRMO. Her mother and I (grandpa) have myotonia congenita. Would like to talk to others
Mike

Hello @montanamike and welcome to connect. We’re all patients and families and caretakers of patients, but we’re not medical professionals so we cant diagnose or offer treatment. But we’re good at listening and finding resources. I’m hoping that our moderator can find some other members, who know of or have, this disease
While we wait, i found this site for you
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5705736/
How old is your granddaughter and how long has she had CRMO?

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Hi @montanamike, I think @elen @tooyoung @k245888 @konniehoover, @carole1, @pmaze2663 also have experience with osteomyelitis.

You might also be interested in joining this discussion:
– Myotonia Congenita https://connect.mayoclinic.org/discussion/myotonia-congenita/

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Hi @montanamike my son has osteomyelitis and AVN. He was recently evaluated for CRMO and found to be negative. there is a great CRMO Facebook group you may find very helpful.

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@elen

Hi @montanamike my son has osteomyelitis and AVN. He was recently evaluated for CRMO and found to be negative. there is a great CRMO Facebook group you may find very helpful.

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Thank you

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