I'm looking for some advice on where to go next. I have been having symptoms since 2007 (I realize not such a long time in the world of autoimmune), but they have recently become much more severe, persistent, and frequent, and are really starting to interfere with my life. I am a young (21) single mom to a young, very active and energetic child and I'm currently half way through nursing school, which is hard enough without pain and fatigue.
I haven't had any autoimmune panel-type labs drawn since 2008, at which time everything was normal. I've seen numerous opthamologists, two rheumatologists, and my internal medicine doctor who I see most of the time (I live in Juneau, Alaska and the nearest rheumatologist is in Anchorage, so I have to fly to see him) - all these doctors have said that I have an autoimmune disease that is seronegative. I know this is very rare, but there it is.
I'm being treated with methotrexate, Humira, and Plaquenil, along with steroids for flares. The problem is that I can't tell the difference between flares and remissions anymore, it just all runs together with good days and bad days; I call it a flare when I've had 10 "bad" days in a row.
I can't seem to find an answer, even the rheumatologist who treats me isn't willing to give me any kind of clinical diagnosis. I'm about to lose my health insurance (divorce) and am quite honestly terrified of what will come of that. Sometimes (on bad days usually) I even start to wonder if I will be able to finish school, work full time, and raise my daughter. It's really depressing to not be able to play with her for very long at a time or go on hikes together anymore.
Where should I go next? When is it time to look for a second opinion? Is there a second opinion? Is this the best treatment I can get, should I just get used to living like this? My parents make me feel like I'm crazy and a hypochondriac, and when I say I'm having a bad day or I overdid it, they look at me with disdain like it's my fault, or I should just snap out of it...
Any and all advice appreciated.