Oh my goodness - you have been through the wringer!!!! I am so sorry you've had such a rough time with all this...but sadly there are many with similar stories. It often takes many years to get diagnosed properly.
It sounds like you are motivated and willing to do what you need to in order to get help and try to get as healthy as you can be. You have had to be essentially on your own with this for many years and try a lot of things in desperation to help yourself....this is a failing of the medical establishment, not of YOU.
My guess is that now you have help, things will change. I hope so! Is your doctor somebody who seems knowledgeable and is willing to talk to you openly and honestly? Make sure you keep a diary of symptoms, and DON'T CHANGE YOUR TREATMENT without talking to your doctor first. It's really important that you trust EACH OTHER - it will be a long relationship between you two, managing this disease - it's really essential that you communicate well with one another. Sounds like you have never had this kind of supportive, trusting relationship with any of the medical providers you have seen over the years - I hope things will be different now that you have a diagnosis.
The diagnosis is only the first step, though - a CRITICAL one, for sure...but even WITH the diagnosis, understand that it may take a year - or more - to find what combination of treatments will work best for you. Every person who has these diseases is different - there is no "one size fits all" approach - so tell your doc what's working for you and what isn't. Include information about diet and supplements and so on. And be patient. Some of the medications (Methotrexate, for instance) can take up to 6 months to become fully effective, and can have side-effects at first. If you can make it through the first couple of months, often the side effects subside. But if you really can't tolerate something, don't just stop taking it - tell your doc and ask for alternatives. Don't risk a flare.
I have Lupus, Sjogren's, APS and Raynaud's, and now they're saying possibly Graves. Oh, and I lost hearing on my right ear due to autoimmune issues. Plaquenil worked well for me after about 6 months, but then the hearing loss happened...so now I am building up my Methotrexate dose to 25mg/once a week, and they are trying to get me off Prednisone. I am lucky - I have not had many side effects. I don't know if it's because I just don't (because of luck), or if it's because I am pretty careful about taking very good care of myself as far as rest, food, lots of water (and I mean LOTS). Based on some blood tests, my doctor put me on a wheat-free diet and a number of vitamin/mineral/fish oil supplements, and that helped me. It doesn't help everybody, and it doesn't cure anything - but it did make me feel better. But it was really important that I worked WITH my doc on all that. Now I feel like he really listens to me and knows I won't switch things up without consulting him. It's hard for him to treat me if I am going off on my own with things. In return, he takes me seriously and works hard to find solutions.
Some doctors are just ignorant, or jerks - I guess you know that all too well. I really hope you have finally found a good one who will help you. And it sounds like your family is also a source of strength, inspiration, and support - that is wonderful. They must be so pleased to finally have some answers, too!!!! I bet with your determination and this new information and your "team", you'll find a "new normal" amidst all the symptoms and tests and medications and so on.
People here on the forums are wonderfully helpful....read through old threads - I have learned so much here.
Welcome - I am sorry you have to be here, but glad you found us. You are not alone!!!!