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Rheumatologist Didn't Believe I Had RA

LisaHess's avatar image

By LisaHess

2 min read

I've had seronegative RA since 2015. It was discovered that I had a huge bone marrow edema covering the C1/C2 vertebrae and was in serious trouble.

I also had an unknown Lyme disease condition which was discovered in 2016 and that I'd had for over 9 years. That is what caused the RA in my body.

Combating lyme disease-induced RA

My infectious disease doctor knew how dangerous my situation was and decided to try a 30-day IV treatment in hopes of shrinking the BME since he believed it was the Lyme that caused the RA that caused the BME. It worked.

I also have osteoporosis caused by Lyme disease.

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Moving forward to 2021 and RA and its inflammation now covers both the C1/C2 vertebra and my brain stem.

My spine surgeon told me I had to get on RA medication ASAP to get the inflammation down or I'm facing the most horrific and dangerous surgery that will alter my life forever.

Disbelived by rheumatologist

I couldn't get an appt with MY rheumatologist for over 2 months so I had my PCP try to get me in sooner. She was successful in getting me an appointment, but not with my doctor.

The doctor I saw was new and very young. I told her my situation. I told her how active the RA has been over the past 6 months. I had my MRI with me.

Unfortunately, the radiologist's report was incorrect and he never read the scans of the C1/C2 of which the prescription for the MRI was specific. She wouldn't look at the scans I brought.

I told her to call my spine surgeon and he will straighten it out. He couldn't get the radiologist to correct the report but had everything documented in his visit report and x-rays.

He sent her his visit report. The new occurrence in my spine occurred extremely quickly (within 3 months) and is progressing and causing the most extreme pain at the base of my neck into the back of my head.

Will RA medication help me?

They got the report and now I wait until I can get in with MY doctor. Hopefully, it's not too late, but I'm now 4 months into this condition and it's getting worse.

I don't know how long it will take for the RA meds to hopefully work, but I needed them 3 months ago and now I need them more. Hopefully, my rheumatologist will see the light and do right by me.

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