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Worried about upcoming rheumatologist appointment
Autoimmune Diseases | Last Active: Mar 5 2:21am | Replies (52)Comment receiving replies
I am in Florida. I think there is a Mayo Clinic in Jacksonville but I am on the west coast. I actually work for a hospital and am fortunate to have decent healthcare coverage but it is limited to our network.
I know the experience of being dismissed about exaggerated period cramps. I cried, missed school, threw up, was unable to walk and had doctors tell me to take ibuprofen. 14 years of that and finally had a doctor do exploratory surgery to find a birth defect requiring a partial removal of the top of my uterus that was causing serious issues in my body. The years of dismal of pain and being told to tone down my anxiety has created a lot self doubt and more anxiety within myself.
I’m sorry you have experienced that as well, but I am glad you now have healthcare providers acknowledging you.
Thank you for your advice.
Replies to "I am in Florida. I think there is a Mayo Clinic in Jacksonville but I am..."
You need a highly rated rheumatologist or endocrinologist.
Keep pushing forward.
Doctors do make mistakes you just haven't found yours yet.
Check their ratings..
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@mas0415 Thank you so much for your reply - yes the medical world is not perfect. I would recommend you follow thru with the Rheumatologist. They will run a bunch of tests and most likely eliminate most of the problems in their wheelhouse. You may show to be positive to one or more tests in which case they can move to the treatment stage. If everything tests negative or normal then you have eliminated the autoimmune issues they deal with - not a bad thing at all. In either case you will know a lot more about yourself.
I have had to peel the onion myself and take control of what is going on as far a medical investigation.
My approach revealed the following issues - They have found tumors which necessitated a hysterectomy; I had IBS-D diagnosed just one year earlier that the hysterectomy completely eliminated. A collection of inflammation fluid in my right shoulder which necessitated aspiration and shoulder injections - one doctor recommend a shoulder replacement operation. A floating kidney - rare, constant pain, and untreated since most doctors don't consider it a problem that needs correcting - they wanted to say it was adhesions. Bilateral trochanter bursitis which has persisted for years and the only treatment offered is steroid injections. Osteoarthritis in my knees for which I receive injections twice a year. I also had a hip pain that was diagnosed by a doctor as an impingement - solvable by teaching me how to walk with my feet a hip's width feet apart. The list goes on - but I won't bore you with more.
My point being doctors want to lump symptoms together and that only got me a diagnosis of PRM from my Rheumy. The treatment for this is long term high doses of steroids - they lumped every join and muscle pain into the same diagnosis ignoring me.
I will admit doctors can only treat what they know about and they can only treat what the tests lead them to. Unfortunately not all problems are known and not all patients have simple problems.