So the banner on the top left is hiding some your question..but I am seeing that maybe it was your primary doctor that is making this diagnosis? your symptoms aren't all on both sides if your body...correct? And you have other tests still waiting to come back?
I have an autoimmune condition/systemic muscle condition called dermatomyositis. It's similar to lupus, etc. I was diagnosed 3 yrs ago. Been through many doctors/rheumatologists. Have been on high dose steroids for 3 years as well, now on IVIG to try to get me off if them (you can't stay on those long).
A few things....from my experience...
1. I'd let the rheumatologist (and ask if they are even the correct specialist to see) be the one to make the diagnosis. They are the spcialists in autoimmune conditons. I'd ask about why you don't have the symptoms on both sides- usually systemic/autoimmune is equal on both sides. Trauma is one side.
2. What tests have they run? Ask for an antibody blood work. Did they run your ANA? Was this positive? That I believe is a marker for autoimmune. I would also request a vit d level test. Just another blood test...good to know and low in many autoimmunes. Easily treated. In my condition, the tests that are the indicators of disease activity are my CPK, aldolase, sed rate, c-reactive, ALT, AST, Jo-1 anti body. All autoimmunes are different though. In your case ask what they are. Always get copies of your blood work!! Keep a file. And know what the normal ranges are.
3. Do some research online for organizations with your condition. There is an arthritis one I know. They also may have resources and referrals for doctor's that specialize in your condition. This I believe is important. I would ask if the Rheumatologist has treated your condition. What success they have had. Have they used the standard treatments? Know if new treatments? Off use labels? Find one that knows your condition.
4. Treatment. One of the other ladies mentioned that steroids are often the first line of treatment for autoimmune. This is typically true. And they are terrible! But necessary sometime. I have been on them for 3 years and an having a terrible time getting off. if its only a short time (less than year) I'd be ok with it personally. If not I'd really research and ask about alternative options. And push for those first. You have to fight for it though. Not easy getting the docs to agree to that before the steroids.
5. Seems like you already are- but most important- with a chronic condition- you must be your own advocate! The doctor's have many many patients with all different diseases. They do their best but you can help. Stay on top of it yourself. Keep your records. Research. Discuss options you find with your doc. They will tell you if they are valid in your case or not. Kind of like a continual brainstorming activity :).
Sorry for so much! Excuse my typis- im on my phone) Good luck!
W.