Re: Hi I'm New here... Rhupus?
Thanks for the reply! Wow, it sounds like you have had a lot going on too. I wonder if eventually a lupus band test might be a good test for me. My skin gets raised red patches but not scaly. I do not notice pain or itch with it. They do not scar or erupt. It only happens on sun exposed skin. My hands or wrists, face/neck. They happen within minutes and eventually the rashes just disappear. The next day I will have sores in the roof of my mouth, horrid fatigue, nausea and a red area on my cheeks and the bridge of my nose (if I am running errands during the day). I am very upset about never being in the sun, it has become very disruptive to my routine and I miss out on so many activities. I react even when driving so try to practice avoidance as much as possible.
They did very thorough auto antibody tests and will revisit them annually since they were all normal a few months ago.
The exact words the doctor used was "mouse bites" for the bone erosions. It was actually discovered when I went in for a foot surgery consult. At least it explains the severe pain I have in the top of my feet. I have bunions and hammertoes and 'dropped' bones due to the ligaments giving way. Do not know the technical stuff except it really hurts. I have not been well enough for surgery so just deal with that.
Thank you for the book referrals I will see what I can find, this just seems very odd. I am currently seeing two doctors. A GP and a Rheumatologist, the GP I am seeing has Lupus and she was ANA negative for years. She will not make diagnosis she just monitors me due to my work, she is very suspicious of the photosensitivity.
I hope you are feeling well and in remission. I have heard sero negative lupus is very rare but just as damaging.
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