The “Top Hospital in the Nation” and my “home hospital” completely disagree on what is going on with me. I had to redo some of the previous tests done out of state now here at home. When I wrote to the doctor I recently saw at the “Top Hospital” last month, he wrote me back immediately. I was very impressed that he would take the time to defend his diagnosis and their test results. I am also very impressed with the team of doctors here at home. I feel blessed to have two great teams of doctors working on my diagnosis. However, the stress from not knowing what is going on inside my body is extremely frustrating and scary. In a perfect world, I wish the two hospitals would work together to figure out my diagnosis.
I wrote the following:
Dear Dr. X,
“Thank you both for your help with my medical care. I wanted to update you on what has happened since I returned home and went to the doctors here.
They disagree on the “undifferentiated connected tissue disease” diagnosis, which you mentioned could happen. They do not believe the positive ANA results from your hospital. I had abnormal cardiolipin antibodies IgG, which I have been told means that they are suspicious of me having antiphospholipid syndrome. They will test me again in 12 weeks.
They do agree with the medication you prescribed.
I wanted to see if either of you had any thoughts about the ANA results.
Thank you for your time. With Much Appreciation, Gina
The doctor from the “Top Hospital” wrote back:
“Dear Gina,
Thanks for the update. I empathize with your challenging situation. As you know, I got involved with your care for evaluation of your arthritis. It became clear in listening to you that you have symptoms in other body systems as well.
Your ANA that had been done in June 2013 (before you saw me) was negative. This was by the enzyme immunoassay (the newer method). Many of us here find this assay to have poor sensitivity as compared to the gold standard, which is the indirect immunofluorescence assay using Hep-2 cell substrate. I ordered this test, and it was positive for you at 1:160.
As we discussed, it is true that this is low titer and in itself not specific. However, my understanding of ANA testing is that one must interpret the result in view of the clinical history. Some patients do have autoimmune rheumatic diseases, such as lupus, despite low titer ANAs. In the context of your history and evaluation, I was suspicious enough that I was comfortable describing your condition as an undifferentiated connective tissue disease. This diagnosis gave us an avenue for treatment.
Incidentally, I think it is good they are looking into the issue of anti-phospholipid antibodies. However, anti-phospholipid syndrome does not cause arthritis. Anti-phospholipid syndrome can be primary or can also occur in the context of lupus or other autoimmune connective tissue diseases. I think repeat testing in 12 weeks is reasonable, and if positive, you should have further evaluation of the anti-phospholipid syndrome diagnostic criteria.
I am glad they agree with the medication I suggested and hope that is beneficial to you.
Best wishes,
Doctor X
I took this email back to my home hospital. They still stand by their decision.
