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A myRAteam Member asked a question 💭
Bedford, TX

I have been 2 rheumatologist and they both told me different possible diagnosis of what is going on with me. My ANA test was positive with speckles and they said that was normal. One of them told me that I have lupus and the other said I am borderline to having RA or a connective tissue disease. I am so frustrated I just want to know what is going on with my body always in constant pain. So I am wanting to know if this is associated with RA my fingers hurt so bad they feel so stiff and I have… read more

June 9, 2020
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Answer Summary

Members rallied around someone frustrated by conflicting diagnoses and unrelenting joint pain, sharing stories of their own lengthy diagnostic... Read more

Members rallied around someone frustrated by conflicting diagnoses and unrelenting joint pain, sharing stories of their own lengthy diagnostic journeys that ranged from eight months to two years and often involved misdiagnoses like pseudo gout before finally getting the right answer. Several members emphasized the importance of self-advocacy, including specifically requesting RA blood panels, keeping detailed symptom diaries, demanding to see lab results yourself, researching medications before accepting them, and finding a rheumatologist who truly listens rather than dismisses your pain. A recurring theme was the validation that diagnostic limbo is exhausting but common, with many urging patience, persistence, and the reminder that you know your body best even when doctors disagree.

A myRAteam Member

SamH is not kidding he knows his stuff and has been very helpful to all of us 😊

June 11, 2020
A myRAteam Member

Sam H
No, they didn't aspirate the joint. I had to finally ask for the rheumatoid panel myself.
I've heard that if there's a major trauma in your life, it can bring an autoimmune disease to the surface (my son had committed suicide 4 mo prior). After the results came back way above normal range, I was sent to a rheumatologist. He then said he thought it was pseudo gout, put me on a med for that and I didn't get better. Finally, I saw a PA and she called the doc into the room; told him she really thought it was RA. That's why it took over a year.

June 10, 2020
A myRAteam Member

Yes, it took a little over a year to diagnose me. I was told at first "pseudo gout".

June 9, 2020
A myRAteam Member

Two years of many, many symptoms.(could barely function)...x-rays, lots of tubes of blood /tests....my regular dr. just prescribed prednisone....would swell up so bad in my legs, thought they were going to explode....Had enough of that...went on to another dr. who started all the testing, etc. and got me in with a wonderful rheumatologist who finally got it all figured out ...and on medications that helped ...I am one of the lucky ones with a great rheumatologist.... whom I hope never retires....but it takes time, lots of trial with meds. (some work for awhile and then don't, etc. ) I suffered in those 2 years...so I know what you are saying/ going through...but hang in there and find a good rheumatologist... Keep up on what is going on with you (keep a diary of it, to show the dr.), plan on labs every so many months and dr visits...and always keep positive thoughts! I went to a foot dr. for my plantar faschitis ... a cortisone shot solved that issue (knock on wood). Read up on the conditions, and the medications. Be with a rheumatologist you not only feel comfortable with, but who listens to what you are telling them. Wish you the best! You get the answers you need...hang in there! Positive vibes! :)

June 9, 2020
A myRAteam Member

@A myRAteam Member
When I first started having symptoms in 2005. It started with extreme sharp pain in my back. Doctor thought maybe kidney infection or maybe I had hurt myself at work by lifting heavy boxes. But the results was negative so, he did further testing . It was determine it was RA. The pain was unbearable. So so devastating. It took awhile to find the right doctor. I will tell u this. Do not ... Do not let a doctor over talk you and tell you it's not that bad as it seems. You know ur body. Make sure you ask specifically for lab work. Make sure u see the lab work for yourself and to get copies and summaries of all office visits. Make sure you talk directly to the doctor and not a PA. You really do your research on medicines before they prescribe it. Don't let them force medications upon you!! with Rheumatologist sometimes it may take months to get ur very first appointment. Everyone I meet would tell me the same thing.
I really hope everything works out for u.

June 9, 2020

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