Still waiting for diagnosis.

By annie49

1 min read

Hi
I started to get symmetrical joint pain at the end of last summer! My hands would ache so much that I’d have quite happily have chopped them off. My knees were aching and swollen, my feet hurt so much first thing in the morning that I could hardly stand up but my worse pain was on the inner side of my elbows (the bit nearest the body). I had bloods test done before Christmas which showed no trace of RA and now I am waiting on the results of X-rays I had on my hands. The oddest thing for me is that I feel like a bit of a fraud as one day everything is totally unbearable and then within a few days my joints feel almost okay again! Does this even sound like RA?

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hwb0w4 Member
Hi Annie: Well, being that you have pains and swelling in joints on both sides of your body, could indicate RA. Of course, there are other things that it could be. Even with RA, I try to think back to locate something that I may have done that would explain a "new" pain that I may be experiencing. Don't think of yourself as a fraud. You are in pain,worried and have legitimate reasons for thinking that your pain and swelling may be caused by RA. You have to rule everything out. When I had my first symptom(s), they lasted only 3 to five days usually. Then nothing for months. Also I didn't have red joints, as evidently many people do. Is there RA in your family? It takes time for the RA to reveal itself. Those who are Seronegative can have RA or another condition. They simply need better tests and more research. I do not wish you to get any of these conditions but I do hope that you get a dxd. for your symptoms soon, so that they can get you on a treatment to help you feel better.
Erin Rush Community Admin
Hi <inline-mention user-id="3108935" username="annie49"/> ! I am sorry you are dealing with this pain and uncertainty. As 2mra stated, there is a form of RA called Seronegative RA, which is when the bloodwork does not reveal RA, but an individual is diagnosed with a number of RA symptoms. You can read more about seronegative RA here -- <a href='https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story' target='_blank'>https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/</a>. You are definitely NOT a fraud. Whether or not you have RA, something has obviously has gone wonky in your body and it needs to be addressed. Don't be afraid to keep advocating for yourself and your health. No one knows your body as well as you do -- hang in there and keep fighting. I hope you get some answers and a firm diagnosis soon. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member.
mcadwell Member
I am still waiting for a diagnosis...it will be 6 rheumatologists and 19 YEARS this summer. My current rheumatologist just started believing me only after taking x-rays of several of my joints. Now that it's too late, the damage has been done, he's treating me for RA but won't tell me I have it until I can have a synovial fluid test. According to him, none of my joints have enough of that fluid to do the test. So, should I hope one of my joints swells up enough? Anyway, I hope you find out what you have. Definitely advocate for yourself. Some doctors won't believe you even with x-rays. You may have to push the doctor or find another one if s/he won't give you a definite diagnosis.
valerie2019 Member
My spouse went to a Rheumatologist in December 2016, described his symptoms, was examined, had blood work and xrays of his hands and feet. He was placed on a burst of Prednisone for 6 days, then returned a couple weeks after that. His labs were negative, but because of his dramatic response to Prednisone, he was diagnosed as having RA. Xrays can be read immediately after they are taken. Perhaps you need to change to a different doctor. There are, I believe, 2 new tests for RA which are very expensive and more specific. This is something else you can look into.
pamelab10 Member
Hi Annie, The inner sides of my elbows is the worst for me as well. I was recently diagnosed with RA (October 2017). Unfortunately, the disease has only progressed over the past three months. I've been dealing with "something not being right" since December 2015, eight weeks after my hysterectomy. I hope you get answers soon. I lost count of how many trips I made to doctors and for tests over the past two years.
maheshraots Member
HI Annie, Specific blood test i.e, ANTI CCP will reveal clearly whether you have RA or not. Anti CCP is more specific and clear. If this test is positive, then patient is considered as affected with RA. Also to know the level of inflamation, CRP and ESR tests are also done. If these are found elevated, then inflamation is high. Now a days, anti CCP, RF, CRP, ESR are adequate to determine whether person is suffering with RA or Not. However this needs to corelated with clinical symptoms also. Anti CCP tests helps to detect the RA at very early stages. Please check with your doctor and hope it helps n wishing you all the best.