So I got a face rash, and went down to get the biopsy done. But I already feel defeated. The derm feels most definitely that this is not a lupus rash, but said he would biopsy it anyway because my rheumy wants it done. He feels it's either eczema or rosacea. He said this certainly doesn't mean I don't have SLE, but that he just doesn't feel my rash is part of it.
But it just doesn't make any sense to me. I get this rash every six months, followed by horrible physical symptoms that last for months. And the cycles go on and on. How could the rash not be related? I'm just so confused and wish my blood would show something.....anything to shed some light on what is going on with me. I have strange symptoms in my blood.
My lymphocyte % is always low, but absolute lymphocyte is normal. One occasion abs lymphocyte was low. My prothrombin time is always high. My INR is sometimes high. My creatinine is always high. My AST and ALT (liver enzymes) have been high on a few occasions. My thyroid is underactive when not in a flare, and goes overactive when in a flare. I mean all this stuff has to mean something, right? I have large bone spurs in my neck which I read can be quite common in people with autoimmune disease like lupus. My ANA is positive, but other antibodies are negative so far.
Why isn't someone putting the pieces of this puzzle together? Why are they only looking at antibodies and not considering anything further? I'm just so frustrated at not getting treatment that could possibly really help me right now and having to keep going through these cycles over and over. Looks like I'm going to have to suffer for years until these other antibodies finally show up. :(
Hi I can relate to you, I have marks that show up on my arms and face. (No rash just bumps that looks like a pimple and crust over) my ana has been negative 2xs but my dna has been positive for SLE lupus. My rheumatologist refuses to diagnose anything but fibromyalgia. I have multiple problems with my back including bone spurs, and nerve problems. I told my husband that when they finally diagnose me it will be to out of control
Have you considered getting a 2nd opinion? There's nothing worse than a doctor that only looks at lab results!
Yeah, it's pretty frustrating. He said that because none of the other antibodies are positive besides my ANA, that it can't be lupus, even though I have like every symptom for lupus. I have heard that you can be negative for those antibodies and still have lupus. Maybe he's not up on the times? I don't know. He's a well respected rheumatologist in the area, I know that much. I think I'm going to ask him for a referral to Stanford. Maybe they can help me.
I agree with hopeful.. labs don't tell the whole story. I had a negative ANA but positive biopsy.. several actually. if possible local lupies can help you find a dr for another opinion. we got each others back ;) thoughts are with you.. be well
hopeful said:
Have you considered getting a 2nd opinion? There's nothing worse than a doctor that only looks at lab results!
Thank you, appreciate it. I am going to get a second opinion. I think there is too much in my labs to ignore, let alone my symptoms.
Yes, I have to agree with getting a second opinion as well. I was told that I tested positive for Lupus (ANA) as well as RA but that I didn't have all the proteins to be diagnosed with either. My rheumy diagnosed me as "Lupus Like" due to my symptoms. My official diagnosis is Undifferentiated Connective Tissue Disease. I get horrible rashes on my scalp and arms and I am in constant pain (I also have Trigeminal Neuralgia).
My rheumy doesn't explain anything and doesn't like to answer questions. Thank goodness for this group for giving me the courage to start looking for a new doctor.
I know how frustrating all of this is - Good Luck!