I hope things go well with your doctor. If that rheumie didn't believe you have autoimmune disease he should have tested you for lyme and every possible infectious organism because obviously, from your bloodwork and health, something is wrong. (I was told the same thing for 15 years when I have lost half my skin pigment and have dark patches and obvious signs of lupus--people on the street would stop me and tell me to go to the doc andtell them to test me for lupus, my malar rash is so classic). Mayo was reluctant to diagnose me with any autoimmune disease because they want to focus deeper on possible causes like unresolved infections. That did nothing for my daily life and to get through the day. They decided I definitely had autoimmune disease without question when They found huge lymph nodes lit up on my PET scan after they told me I definitely did NOT have cancer (with absolutely no testingto support them).
For some docs, it makes them feel big to do this, to go against the grain and to make pronouncements. I did realize one thing, that while I prayed for myself and everyone else who was sick, I did not pray for the doctors. Praying for them seems to help my attitude. I'm very jaded about medicine.
I don't know where you live but I have an excellent male rheumie who is very very good and would get you back under control. Why stop the plaquenil? I don't get that one. I'll probably be on that forever. I hope your new doc helps and maybe your cousin can go with you. I am overweight, and nowadays it has become politically correct to be downright cruel to anyone overweight. Most people who are drastically overweight have medical problems that preceded their weight gain, inmy case, my liver. I argue with docs about it all day long. ONly the liver transplant guys understand really why I have weight and have lost so much muscle and how hard it is for meto lose any weight with a malfunctioning liver and endocrine problems and rounds ofsteroids.
I feel for you and hope things work out.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids