Hello @lily2013 — welcome to Mayo Connect. I’m glad you found us and I’m hoping another Connect member that has had similar symptoms will see your post and respond. I have no medical training or background but there are so many autoimmune diseases out there that it sure sounds like a possibility. I have polymyalgia rheumatica (PMR) and the drug of choice is prednisone. I’m in my second occurrence of PMR and the first time it took me three years to taper off of prednisone, the last six months going back and forth between 1 mg and 1/2 mg dose until I could be off of the drug and not have the associated pain that comes with PMR. The PMR went into remission for 6 years and popped up again a little over a year ago. Both times I was started on a 20 mg dosage and tapered by 5 mg a month unless I had pain when tapering then I reduced the tapering amount by using 1 mg or 2.5 mg tablets. I’m wondering if the swelling goes away when you go on prednisone maybe you just have to taper slower until the see how long it takes or how low a dosage it takes before the swelling is gone.
I don’t know if it’s a possibility but Mayo Clinic uses a team approach with a team of specialists and are very good at diagnosing hard to diagnose health problems. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63.
I thought you might find this video interesting since it’s about trying to figure out what is causing a health problem:
What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.