The thing is... Lupus is a "bucket" diagnosis. It isnt like "Ya, you have colon cancer because we can see the cancer in your colon" (sorry if that is a terrible analogy but my dad passed from colon cancer a year ago and it was pretty obvious he had colon cancer). It isnt like an allergy to grass where an allergist can do a test, watch your skin swell up and say "wow.. ya, you have an allergy to grass". Your ANA can be normal and yet you can be miserable.. and still have the other "check boxes" that point at Lupus - or not. My ANA goes positive to negative all the time and I feel the exact same.... crappy... ha ha. My blood tests can be 100% normal ... and I still have lupus and feel crappy. A few rheumys doubted this was lupus (I was a very, very white 44 year old male with viking ancestry and no family history of autoimmune... so not exactly fitting the profile... but here I am) but then it moved into my kidneys and it was "ya, you have lupus nephritis... oops".
All in all - when the PCP's cant figure it out, and your symptoms are all over the map, find a rheumatologist. It is mostly likely autoimmune of some type. They are all *mostly* treated the same. You get a crapload of Prednisone and you feel better for a week
. The thing with Rheumy's is that you have to find one who specializes in Lupus or other autoimmune. Many of them (especially older ones) are only good at Rheumatoid Arthritis. They are not really autoimmune Rheumys. I found that out the hard way.
What is the bottom line? You feel crappy and the PCP cant find anything wrong with you right? Find a specialist. Keep in mind Lupus, Fibromyalgia, and a host of other "women's diseases" were - until recently - treated with anti-depressants and Valium
. It was all in your head! Get out of bed and fix dinner! That has changed, but they are still very, very hard to diagnose.
And to live4mybabies - kidney stones have nothing to do with autoimmune (you probably already know that). The sun sensitivity is almost a giveaway here. No other disease (that I have read about
) causes you to feel sick or tired from the sun. My recommendation - have your PCP check your urine for protein (easy dip stick test). The fatigue is pretty much part of every autoimmune out there but can be a million other things too... lack of sleep, allergies, diet etc.. The joint pain can be any number of things too. The high blood pressure also isnt lupus but could be a kidney issue. All in all you need to get to a rheumy just for piece of mind. My kids are a real "pain"... but they dont cause pain! <grin>.
Oh - and you are not going to die
. You may feel like you want to (I am pretty sure everyone on this forum feels like they are pretty much done at one time or another) but there are treatments that help you live a normal lifespan. You may not feel like you used to, but you will live long enough to see your kids graduate college and make grandkids. It isnt all bad. Trust us.
Keep us all posted on what you find out please.