Confused and Exhausted
Last updated: March 2023
I was adopted at 3 days old. My adoptive mother never told me any information and was quite touchy about the subject. I'm now 54 with children and grandchildren and the mystery continues.
My growing list of symptoms
I've been sick a lot in my life but since 2014 everyone that knows me is confused. It started with a stroke-like episode that left me unable to talk correctly and made me walk funny. I had years of migraines and seizures with no explanation. Plus lots of strange symptoms that doctors never seemed to correlate. Now I'm allergic to the sun, with extreme photosensitivity. Vasculitis, arthritis, and pain in my joints. Vision loss, diplopia. Fatigue, hemorrhagic cystitis, spondylitis, neuropathy, edema, scoliosis, severe cervical stenosis, and undiagnosed kidney and bowel problems.
Searching for answers
I've had one positive ANA and a few elevated dsDNA. Mouth sores, vaginal/rectal sores. As well as a strange whiteness on my neck that is still unexplained. It could be a rash. But to top off a lot of my misery, my children and one grandchild so far are also sick. Multiple autoimmune disorders, autism, fibromyalgia, type 1 diabetes, rashes and pains. Migraines in all. It's definitely a quandary. My rheumatologist thinks I might have lupus. I've searched far and wide literally living in 3 different states and over 17 moves in these years since. I thought I've had everything from MS to Behcet's.
Waiting on a diagnosis
I'm finally on treatment and am thankful my doctors aren't waiting for my lab to catch up or whatever we call it. I will be happy with a diagnosis though it feels like it's more than just me it's riding on. Thank you for letting me share even though I'm not diagnosed yet.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?