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Undiagnosed and getting worse

Posted by thesrod @thesrod, Aug 22, 2020

About 9 months ago my joint started to sprain unexpectedly. Also it's attacking my ligaments. at first the doctors thought I might have reactive arthritis and put me on prednisone. But now I've flared up again. Things are worse because the prednisone dose is not high enough. I have braces all over my body. I'm constantly icing joints and experiencing throbbing and swelling. I can't walk or do much of anything. The doctors have tested my blood and done a bone scan and found nothing. I saw two rheumatologists in my town and they don't know what's going on. I have a third opinion booked at a top hospital with a rheumatologist. Is there anything else I can do to get a proper diagnosis and treatment? Should I be seeing any other type of doctor?

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 22, 2020

Hello @thesrod, Welcome to Mayo Clinic Connect. Sorry to hear your doctors and local rheumatologists have not been able to provide a diagnosis and treatment that helps. It's good that you are seeking help at a top hospital with a rheumatologist. You mentioned you have braces all over your body. Are you able to provide a little more information on the braces?

I have no medical training or background but believe a rheumatologist is the right specialty to see for the joint pain and swelling symptoms you mentioned. The symptoms sound similar to Rheumatoid arthritis -- Rheumatoid arthritis - Symptoms and causes - Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648

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fighter | @fighter | Aug 22, 2020

Where are you located? Maybe someone on Mayo Clinic Connect knows of a good Dr.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 22, 2020

Hello @thesrod i certainly hope you get some answers soon! It took about 8 months before I got a diagnosis and it usually takes years. Especially with autoimmune diseases because so many of them are just being discovered. Mine was first named in 2010.
I’m so glad you’re being assertive in seeing doctors. Start keeping notes on everything! If the doctors are not on the same computer system, keep their notes and lab tests in a notebook so you have everything in one place. I’m glad you’re going to a top hospital and you’ll see two rheumatologists. Check to see if they are Board Certified in autoimmune diseases. Will you get back to us and let us know what you learn?

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