Silent Lupus

I spoke with several people, and asked them about “silent lupus”. That’s what my rheumatologist told me. I have that for now. Nobody I talked with has ever heard of it. Apparently, it’s also called undifferentiated connective tissue disease. So it’s not lupus? Yes and no. My rheumatologist said that it’s best to tell other doctors that I have SLE, just to be safe. What I have is still an autoimmune disease. My blood indicates lupus, but out of the 11 criteria, I only have 3 as I wrote in a previous post (4 is required for diagnosis). It can turn into full-blown lupus at any time. Right now, it doesn’t affect my organs.

After doing some research, I figured out that when lupus can’t be clearly diagnosed, the only thing they can do is guess. I could have latent lupus which involves the kidneys even if the usual symptoms have not been manifested. Then there is partial lupus, and mild lupus that’s in remission. Wow. I guess I’m a complicated case. I wish I wasn’t. I just want a diagnosis.

Oh and meantime, I’m still waiting for the verdict regarding blood cancer. Highly not likely, but I may need the dreaded bone marrow biopsy to rule it out. My lab results are confusing. Everything that’s off can be signs of autoimmune disease AND/OR blood cancer. Ummm have I mentioned I’m a complicated case?

What can you do if you're facing a half-diagnosis like mine?

• If needed, try to get a second opinion. I know it's hard to find providers/get referrals/ schedule an appointment, but sometimes, it's worth it.

• Keep up with your diet and exercise.

• Keep working on stress reduction.

• Keep doing research.

No matter what the final diagnosis will be, these are always useful.