Big hug! Thank you for sharing your story! I have chronic ostomyelitis where a tooth was removed, now 10 years low grade infection after a paradontist forgot to take out their cotton after a root canal... Unfortunately the symptoms showed up 4 years later and I could not find the name of the paradontist back to tell them what they did. I let myself be referred to a specialist, and had surgery to remove part of the bone, but it came back. Dentists don't get it and just tell me to floss (which I have been doing with no betterment, but it's ridiculous advice anyway). It's scary, even for me. It has been just a little nuisance compared to what you are going through, but the location being connected to my brain and the infection being in the middle of my face is stressfull. I wish you the best !!
I got diagnosed with osteomyelitis after 10 years of chronic pain. The doctors misdiagnosed it and brushed it off as just cramps as I was really young. 10 years later a new doctor said he suspected infection and I had surgery. Everything removed showed nothing, no bacteria , no fungi, no evidence of anything, and the same went with my blood work, it was perfect and the doctors are still confused what’s wrong with me. I’m now having on and off pain again
Hi, thanks for commenting. I need to make an update video, but essentially after surgery, bone biopsies, and imaging, they never could find infection or fungi. I ultimately was diagnosed with a disorder called Chronic Recurrent Multifocal Osteomyelitis or Non-Bacterial Osteomyelitis. I would bring it up with a rheumatologist because you sound like the perfect candidate for it. It typically manifests during childhood but it’s something we’re born with. It’s a pretty uncommon diagnosis as well so depending on where you’re located it may be harder to find doctors that understand and can diagnose you properly. I would be happy to discuss more with you if you’d like.
Big hug! Thank you for sharing your story! I have chronic ostomyelitis where a tooth was removed, now 10 years low grade infection after a paradontist forgot to take out their cotton after a root canal... Unfortunately the symptoms showed up 4 years later and I could not find the name of the paradontist back to tell them what they did. I let myself be referred to a specialist, and had surgery to remove part of the bone, but it came back. Dentists don't get it and just tell me to floss (which I have been doing with no betterment, but it's ridiculous advice anyway). It's scary, even for me. It has been just a little nuisance compared to what you are going through, but the location being connected to my brain and the infection being in the middle of my face is stressfull. I wish you the best !!
I got diagnosed with osteomyelitis after 10 years of chronic pain. The doctors misdiagnosed it and brushed it off as just cramps as I was really young. 10 years later a new doctor said he suspected infection and I had surgery. Everything removed showed nothing, no bacteria , no fungi, no evidence of anything, and the same went with my blood work, it was perfect and the doctors are still confused what’s wrong with me. I’m now having on and off pain again
Hi, thanks for commenting. I need to make an update video, but essentially after surgery, bone biopsies, and imaging, they never could find infection or fungi. I ultimately was diagnosed with a disorder called Chronic Recurrent Multifocal Osteomyelitis or Non-Bacterial Osteomyelitis. I would bring it up with a rheumatologist because you sound like the perfect candidate for it. It typically manifests during childhood but it’s something we’re born with. It’s a pretty uncommon diagnosis as well so depending on where you’re located it may be harder to find doctors that understand and can diagnose you properly.
I would be happy to discuss more with you if you’d like.