I was too busy trying to deal with being a quadriplegic with a feeding tube. Just was not ready to be totally disabled without a fight. I was very fortunate to have great docs and therapists who helped me to get vertical and independent again. For the past 4 years I have been rehabbing on my own and made a one of a kind recovery given the extreme nature of my case. Life is good.
You should not be dealing with a nurse practitioner. Most rheumys only see a handful of mctd cases in a career and they are complicated, unpredictable and require a doctor with experience and interest in treating you. I would seek a second opinion from an experienced rheumy.
If you feel like crap, you are sick...regardless of your labs. Your nurse practioner is well intended I am sure but way out of her pay grade. I had 2 rheumys with 25-30 years experience each who called in a world famous clinical researcher to consult on my life threatening case. Few cases of mctd are like mine but any AI disease can be complicated and potentially life threatening.
MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.