I will try to make this as short as possible, but I think we all know, most of our 'journeys' have been long and winding.
about 15 years ago, I developed a rash on my chest and back. Finally, it was biopsied and it came back as subacute cutaneous lupus. Back then, it was thought that this condition VERY RARELY converted to systemic lupus. Now, I think the numbers are a bit higher. I was younger, I had a low positive ANA, and I basically just stopped seeing the rheumatologist. He was not 'treating' anything really.
Fast forward to four years ago, and I found myself really not feeling well at all. I started choking, choking, choking ... a dry choke, which was quite embarrassing. I saw an ENT, who sent me to a GI guy. I was diagnosed with 'silent reflux' and I had a BRAVO study (to measure the amount of acid spilling up into my esophagus), which showed the worst reflux my GI doc had ever seen in his practice. I had NO heartburn, just choking.
Meanwhile, I developed terrible diarrhea. My entire GI system was crashing. I had a colonoscopy with biopsies, showing lymphocytic colitis. Unusual ... not very serious ... but thought to be autoimmune-related.
I was sent back to a rheumatologist for evaluation. He ran my ANA ... it was negative ... and he patted me on the head and sent me on my way.
Over the next couple of years, I just kept feeling sicker and sicker. I developed several telangectasias on my arms, face, and hands. My urinalysis started showing protein in it. My hands would swell up, predominately in the a.m. I also developed Raynaud's ... grossing people out when it would happen. I have terrible livedo on my legs, so bad I keep them hidden most times.
I saw my primary care physician. She sent me to Boston, thinking I had scleroderma. That was a total waste of an appointment ... again, he did an ANA, it was negative and guess what? He patted me on the head and sent me on my way. Nothing wrong.
I kept feeling sicker and sicker. It felt like I was walking through water. I was choking ... and a barium swallow showed dysmotility in my esophagus.
I finally went back to the rheumatologist ... and again, I could tell he was going to send me on my way. I almost lost it with him, but instead, I FIRMLY told him to 'figure this out'. He finally agreed to run additional blood work. I returned ... and was told I had a negative ANA. No surprise. BUT ... I now had a positive Smith antibody (lupus), a positive Mi-2 antibody (dermatomyositis), and positive anticardiolipin antibodies. FINALLY .... an answer.
Well, he starts me on Placquenil and steroids, and nothing. I truly do not feel much better. The rash improves, but I can't say anything else did (especially my hand pain/swelling, my fatigue, etc.).
I tell him that I'm still not feeling improvement. He says, "I think you're just overweight and out of shape". My God, I couldn't believe it. I had gained about 25 pounds since starting the steroids, but before that I had maintained a VERY healthy weight. I tried to watch what I ate ... but I just looked at a prednisone pill, and I put on a pound!
During this time, I also developed numbness in my feet and hands. I saw a neurologist. She worked me up ... and whoola ... I am now found to have pernicious anemia. I have the IF antibody and will remain on B12 shots for the remainder of my life. Another autoimmune condition. (I have been on the bi-weekly shots for almost a year now, and nothing has improved ... my numbness, my fatigue, etc.)
So, there I was ... not feeling well ... out there for a year on steroids with NO improvement, and my rheumy didn't really know what to do with me. Wanted me to try hypnosis.
I spoke to my PCP and she thought my treatment was sorely lacking, so she sent me to a very well known specialty clinic for lupus and dermatomyositis. Off I went.
I get there. I am completely worked up. Long story short ... EVERYTHING COMES BACK NEGATIVE! Everything. The Smith antibody. The myositis panel. The anticardiolipin antibodies. EVERYTHING. The urinalysis showed only trace protein (instead of the consistent 1+ or 2+). I was so normal ... that I could not even get the doctor to call me back to discuss all of this. I was confused. My labs at home were run by 3 different labs, all well known and respected ... were they ALL false positives??
My family thinks I'm nuts. My PCP doesn't know what to do. My friends are all so happy ... 'nothing is wrong'. Meanwhile, I feel like crap. I can't get out of my own way, I'm choking to death, I have diarrhea, my hands are swollen up like Mickey Mouse's, blah, blah, blah ... I'd be the life of the party if you want to invite me to yours!
I am paralyzed. I don't know what to do. I know I shouldn't have, but I weaned myself off the prednisone and took myself off the Placquenil. I don't want to go back to my old rheumy ... I can't get the specialty physician to even call me back (VERY frustrating considering the money I spent to go there) ... and I am just sitting here, not knowing what to do.
Can anyone share with me what they would do? Do I go back to the old rheumy who thought I was fat and lazy when the prednisone didn't 'work' and duke it out with him? Do I call the specialty doc for the third time, begging her attention? Do I start all over with another rheumy (I would have to go out of town because there is only one group in my area). I just don't know how to deal with all of this.
If you've gotten this far ... thanks. If you can offer any advice ... it's appreciated. I really do feel all alone ... and a bit nutty.