Thank you for your reply. I wasn't sure if this was something I should mention to my doctor.
I have so many questions. I hope you will try to answer them for me.
I ended up with a neurologist because I had to go to the emergency room due to exhaustion, depression and extreme pain. After examination, the neurologist said I had weakness and "neurological deficits" on my right side. He sent me for an MRI and my follow up with him was at the MS clinic. The MRI was clear, no lesions, so he sent me for blood work. I realized that part of the blood work was for Lupus. I started doing research and realized that a lot of what was described had been happening for years. In my early 20's I "burnt out" and did nothing but sleep for 2 weeks, I had joint pain in my hands and hips and I had blood/protein in my urine (I was on long term - 6 months - antibiotics for it). Over the years I have had numerous bouts of pneumonia and was put on prednisone for it. I still have blood/protein in my urine. Over the years everything was blamed on my hypothyroidism. When I began to lose cognitive function, I was tested for B12 deficiency. That was low. My MCV is high, which indicates pernicious anemia being the cause. My depression over the years has been so severe that I have been suicidal at times. Each of these things have been written off to something else or told they didn't know what was causing it.
Some of my newer symptoms include feet so cold that I get leg cramps and bladder incontinence.
Looking at the criteria, I have and have had 1) Malar Rash; 2) Oral ulcers; 3) Nonerosive Arthritis; 4) Persistent proteinuria > 0.5 grams per day or > than 3+ if quantitation not performed; and 5) Psychosis--in the absence of offending drugs or known metabolic derangements, e.g., uremia, ketoacidosis, or electrolyte imbalance. I now have "an abnormal serum level of IgG or IgM anticardiolipin antibodies" but it is not high enough to be considered positive.
I am afraid to push this without lab evidence and come out seeming like I am a hypochondriac. A majority of these symptoms are visible and I can't "fake" them. The swelling is obvious, even saw a rheumatologist for it. She said it was some kind of arthritis, but stopped there because my c-reactive, ana and RF were all normal.
Here are my questions:
1) How do I approach this subject without being dismissed?
2) Should I go get all my previous blood work to see if there was ever a positive ana? Would it be considered now?
3) I had a period of little to no symptoms, could this have been from the prednisone I have been on and off of over the years? Or maybe I was in remission?
4) My pain and swelling in my joints are worse at night. The rheumatologist said that it wasn't a rheumatology thing because I would be worse in the morning. I am stiff and sore in the morning. As I get moving things get better, but by late afternoon/early evening the swelling is at full force and by the time I go to bed at 9pm, the pain is bad. Has anyone else this happen?
Sorry this is so long...sooo many questions.