I agree with everyone else. Sometimes the big docs in the fancy medical places or that are reputed to be the "best" aren't the best for us. Often, a caring competent, less well-known physician will do a better job for you. Johns-Hopkins almost ensures arrogance, and med ctrs like that act like why are you wasting my time, come back once your on deaths door.
The main thing is that the doctor you get listens to you and believes you and perhaps a good rheumie outside of a huge center might be more helpful, provided they are good. It's good he ran the tests. I always, everytime they check it have a high ANA with speckled pattern, I am neg for ds-dna, ssa, ssb, rheumatoid factor, complements sometimes out of whack, other bloodwork strangely abnormal, but not indicative of a particular disorder. I do have extremely dry eyes and was diagnosed with a "sjogrens like, lupus-like disorder" and treated with plaquenil, a milder immunosuppressant/antimalarial. I also have IBS, diverticulosis, autoimmune thyroid disease (hashimotos) and other endocrine disorders. In my case, over thirteen years I was told that I "didn't want to be sick, that so many patients with hepc and that have been on interferon develop autoimmune disease and I just didn't want to be one of them, that they had seen so many young people die of these problems" like I could stop it by just wishing it away.
In my case, the doctor feels that my Autoimmune condition is secondary to some other problem that is yet undiagnosed. There is primary autoimmune disease and secondary autoimmune disease and he explained that in secondary autoimmune disease, patients often don't have the genetic markers that many less skilled physicians assume MUST be there for a diagnosis of AI disease. I also have skin problems. It sounds like they were willing to treat you for CT disease at one point, did you get results from the tests done by that doc and bring them to the new rheumie? Maybe that will help. Could be that your doc feels you are just not sick enough to warrant his great expertise, and that even if you have AI disease, he feels another doc can manage it. Its totally arrogant, but it happens. I wish you the best on your tests. Also, if you are having liver problems or have had hepc in the past or taken interferon, I have alot of info about that, any of those things can trigger autoimmune disease.
As for the rash, sounds like mine. Does it go away when you take antihistamines? Sometimes I get red when my histamines are high, I can press on my arms and the red will go away, and if I get scratched in any way, it stays red for some time. But having put roseacea cream on the face for a while now with no improvement, perhaps worsening, I can tell you that it does not have to be raised to AI type rash. Maybe you can get a referral to a dermatologist on that and it would help with diagnosis?
It sounds from your post that you are really having a time of it. A second opinion is always an ok thing. I sure hope you feel better and get this squared away and figure out what is wrong and get it fixed. On the urology side, the scope is no big deal, but that only tells about bladder, I do have polyps on my urethra and they cause a lot of bleeding sometimes, even when I wipe, which really freaked me out since I have had a hysterectomy long ago! I thought it grew back! The scope will tell you nothing about your kidneys, which would be the protein part and you need a catscan or mri of kidneys and other tests for that, but a urologist wouldn't be bad to go to, they can do a cystoscope right then and there and give you some answers.
Well, I'm sorry you are so sick and I hope you feel better. Let me know if you need liver info.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments