Re: cannot get answers
Pescadora, hi. Sorry to read about your various problems---horribly frustrating for you! First off, I'm just a (dumb) patient, so please take what I write in that light, OK?
In your shoes I'd see a dermatologist or dermatopathologist to look into your photosensitive rashes. (From what you wrote, I'm assuming these are different from the hive-like erputions you describe...?) By "look into", I mean deep-punch skin biopsy, *including* immunofluorescent stain tests.
I'd also talk to my dr., to discuss & get copies of recent bloodwork & urinalysis. (a) Ask if you've been tested for thyroid function. (b) Ask if autoimmune testing has been done. By that, I mean ALL manner of specialized blood tests, not merely ANA. (Because ANA is only a "threshold" test, it isn't diagnostic of any condition). (c) Since torn meniscus NOT found, ask what else could account for leg swelling, e.g., heart, kidney, ETC. (d) Review all meds (incl. OTC's) you take, if any.
If your dr. & you believe an autoimmune is possible, look for hardcover authors in your local library. One is Dr. Daniel Wallace; another is Dr. Robert Lahita. Dr. Wallace discusses various lupus-specific rashes in one chapter; bloodwork in another; every body system in others; and he recaps, in one especially useful chapter, how he distinguishes lupus from other autoimmunes like RA, polymyositis, etc. He also discusses a form of lupus called drug-induced (DILE), and lists common culprits.
You want a REALLY up-to-date dermie, BTW. I got waylaid because my local drs. considered only the two best-known lupus rashes, malar butterfly & scarring discoid. I had NEITHER. I found out later there are 12 or more unique rashes seen in lupus, some very rare, some more common. I had a "variant" called "subacute cutaneous lupus erythematosus, annular form". I ended up seeing a teaching hospital rheumie---got answers in a month!
I also found out the hard way that bloodwork isn't 100% foolproof. As in life, there are exceptions to the rules. My ANA stayed negative, which happens in a very small % of lupus patients. Once they saw negative ANA, I wonder how many drs. (if any) looked for more specific autoantibodies. (For me, it was anti-Ro that was positive.)
I hope your dr. and you can take a fresh look at everything. As one of my local drs. put it, it makes sense to first consider a "single bullet theory", meaning something that explains all or most of your problems. Post more when you can, OK? Meanwhile, sending you my best wishes, sincerely, Vee