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Neuropathy? My Rheumatologist Believes That I Have This She Said Right Now She Doesn’t Believe I Have RA.

A myRAteam Member asked a question 💭
Jacksonville, FL

I may have early disease but she doesn’t think so. 🤷‍♀️

May 10, 2024
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A myRAteam Member

As several people have said what is your physician's specialty - if they are not Rheumatologists then you need to find a real Rheumatologist.

I was clear on all tests, except the anti-ccp -- like Esther 6 it was out of the ballpark it was so high. So I am Seropositive.

By the way, check out the reputation of the Rheumatologist you are going to or will go to - I went to one that didn't do any blood tests, no imaging, walked in the room looked at me and said "you don't have RA, just regular old arthritis, when it gets so bad you can't take it come back and I'll give you some medication" - This guy was a quack even though he was with a good sized multi-specialty group - went to an RA group that is part of a major hospital, Methodist Hospital Houston, and they did the tests and imaging and got the hit on the anti-ccp test. Later in the year, she noted that I complained about my neck and she had an MRI done and a month later I had neurosurgery with a laminectomy and fusion from C2 to T2. She noted this was not connected with my RA nor my OA, but was from an old injury of years ago. But she could differentiate between the neck problems and my RA problems in the rest of my body.

See a real Rheumatologist, and if you have one already that is giving you this wavering diagnosis -- get a 2nd opinion from someone who your existing doctor has NOT referred you to.

May 10, 2024 (edited)
A myRAteam Member

What is the most diagnostic test for RA?
Rheumatoid Arthritis: Diagnosis, Treatment, and Steps to Take
Anti-cyclic citrullinated peptide antibody (anti-CCP).

This blood test checks for anti-CCP antibodies, which appear in many people with rheumatoid arthritis. In addition, anti-CCP can appear before RA symptoms develop, which can help doctors diagnose the disease early.

Rheumatoid Arthritis: Diagnosis, Treatment, and Steps to Take

National Institutes of Health (NIH) (.gov)
Hubby's Anti-CCP was 386 I think before the definitive diagnosis. RF was 0 and ESR was 0 also or VERY low. He also has had Psoriasis since he was 12 years old. Diagnosed with RA at 73.

May 10, 2024 (edited)
A myRAteam Member

For some it can be very difficult to get a diagnosis. My RA markers were all elevated. My CRP and ESR were normal - they have remained so even when my joints are so painful, stiff and swollen that I can barely walk or open my hands. Both of my rheumatologists have told me that those numbers are unreliable. I'm sorry you are hurting and having a tough time getting to the bottom of this.

May 10, 2024
A myRAteam Member

Karen, I have RA and Neuropathy and it's definitely a different kind of hurt and feeling. I am seronegative. But the MRI's and CT scans have showed it. My ANA has been off the chart at times. They did a nerve conduction test on my feet and arms. That's how they found the neuropathy. My arm was damaged in surgeries. But not my feet. I would get a second opinion. I wish you luck! 🙏❤️

May 10, 2024
A myRAteam Member

I have neuropathy and RA…your Rheumatologist must have a reason to think! It is possible and probable!

May 10, 2024

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