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Has Anyone Been Diagnosed By One Doctor To Have Another Say It's Wrong?

A myRAteam Member asked a question 💭
Cheyenne, WY

I have been stiff for several years, in pain for the last couple, and severe bouts of exhaustion. I was diagnosed by the first doctor I saw about a year ago. After gallium scan and 14 tubes of blood. I wasn't find of my rheumy, so I decided to try another one. The be one listens better, but ordered a few tests, and all came back negative. He thinks I had parvovirus, which caused all of my other tests to be false positives. I'm still having all of the symptoms as before, and more.

April 6, 2017
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A myRAteam Member

Usually there is a number that tells you how severe it is. Normal score for a RA test should be less than 14. Mine was 638 when I was first diagnosed. Now, 13 years later, it hovers around 50. Ask your rheumy when you see him/her next. You should have also gotten a score on the Vectra. I just got mine back and it was 32. It had doubled since I had the test done two years ago. Anything less than 20 is good.

April 12, 2017
A myRAteam Member

I had seen a rheumy for years and he refused to agree that I had RA. MY OTHER Dr said I did. I knew I had FM AND SJOGRENS REYNAUD'S OSTEOPOROSIS OA. I CHANGED Dr. My new rheumy looked at my hands and fingers and wrists and he said you are all swollen and inflamed. He took X-rays and then told me I had RA AND PSEUDO GOUT. He also did a sonogram of my hands. He also took viles and viles and told me I was SERONEGATIVE. I do research on everything and read about that. My Sed Rate was 95.
With all the autoimmune diseases I have plus going through CABG SURGERY, DOUBLE BY PASS WHICH didn't work. I have a pacemaker but after I heard I had RA I Finally realized I was sick. Have had so many surgeries caused me to numb out and sort of bifurcate myself from myself. Can you understand this. Yet again hearing I RA affected me emotional way because of all that can happen.
I could write forever but I'll say bye for now.
All of you thinking you have RA CHANGE DR.
Seronegative is as real as seropositive.

December 18, 2022
A myRAteam Member

There is a Vector test (vectra?) your ra doc can order. They have to send it to Berkley. It will rate your level of RA low to high. I'm seronegative but rated medium-high level. Yes, my PC doc knew nothing of RA or the meds. She did not believe I had it bc I LOOK healthy and young for my age. (Genetics) I dont dress like a granny or act like one either. (orneryness) But I still have lotsa pain, swelling, stiffness, sleep issues, weakness, fatigue and fog. And I respond well to steroids. RA. I find pharmacists know nothing abt RA drugs either or their interactions with other drugs or side effects. This really bothers me that regular docs don't have to take introductory courses in rheumatology. It's elective. And most don't.

November 27, 2022
A myRAteam Member

My first rheumatologist...I was diagnosed abt 10 yrs ago sero negative ra and osteo arth and fibromyalgia.
Had to see a new Rheumatologist bc of insurance. He said I don't have RA but it's fibromyalgia bc my blood tests are negative for ra. He is a rigid believer in tests are proof. No exceptions for genetics or relatives with the diagnosis. Or for blatant swelling and inflammation. So I see my first doctor and pay out of pocket to receive the care that helps best. If you aren't satisfied with a diagnosis- seek a second, third or fourth opinion for your own conscience and comfort. It doesn't matter how others feel or think about your decisions and your health. You are in control and know your own body. You are capable. Get answers and results.

April 15, 2023
A myRAteam Member

Have them do an RA factor blood test. You might also ask about the Vectra blood test.

April 12, 2017

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