@ebjj4health I have had clippers for about 8 years now. It took the docs quite awhile to diagnose the illness since they’d never seen it before. The neurologist. Knew what to call it but not how to treat it. My husband then called the university hospital and they knew about it and gave us an appointment. The neurologist-immunologist was out on maternity leave but the medical Fellows were there and they treated me under her supervision by phone. The course has been up and down but I’m doing OK. I’ve had some real ups and downs but my friends have learned how to keep an eye on me.
I was on mycophenolate and then switched to Myfortic because I developed an allergy to the mycophenolate. I’m off Myfortic and now get infusions of rituxan twice a year. About 3-4 times a year I “crash”, meaning I just feel awful for a few days, then I’m back to my new normal again.
The best thing for you is to trust your doctors, but if you can’t, find a new one. And let your spouse help you so they can understand what you’re going thru. And believe in yourself. Maybe set a goal for yourself or take a trip (but not to Europe). Or go somewhere fun or do something fun! Just don’t let clippers take over your life!