Thanks Janna,
Do you have "Lupus overlap"? Honestly I am still waiting for results of a skin biopsy on my scalp. The first lab said that they see an ulcer of unknown origin. The biopsy was sent to another "special" lab, and 7 weeks later...
My skin patches just came out of nowhere last November. At first I thought it was some form of acne because each patch would have a bunch of "tapioca". I could ex-foliate, and get it all out only to have it come back within a day or two. The more I messed with it the more it spread. I first went to the doc because I had an infected back tooth, and thought that it might be related to my skin not healing, and the odd problems with my neck joints. I was told that it was not related. After several trips to the doctor (keep in mind that I never saw the same provider twice), 5 types of antibiotics, and fungal meds, it was still not going away. That is when I went to a wonderful PA who ordered the bloodwork, and referred me to dermatology for a skin biopsy, and gave me hydrocortizone cream for my scalp. By this time I was really worn down from the mental side of having two big sores on my face for 3 months in a row, so when the dermatologist took one quick look at me and said, "I am not seeing anything unusual", I thought I was nuts. She told me to keep the sores moist and covered for 3 weeks and come in for a follow up. She said that she thought I was picking at them, and that that is why they would not heal. Well, I had scratched, and ex-foliated, so there was some partial truth to that, but when I told her that I knew it was not normal (in a very kind and submissive voice) she said, "The white you are seeing is how the skin repairs itself and you can look it up of you like". So I said ok, I will keep it covered and see what happends. 3 weeks later, my skin is doing much better (I think more due to using the hydrocortizone than anything), but still far from normal, I go in for the follow up. She said that I was healing great, but then gave me betamethasonevalerate foam .12%. The same day I had a follow up with family practice to get the results of my bloodwork. This pa (not the one who ordered them) told me that everything came back normal, except for ana. He said that he did not know what to do about it, and since derm said that my skin was healing fine, he would just leave it alone for now. 2 weeks later, I go back in because the sores were still not completely healed, and thankfully saw the pa who had ordered the bloodwork. He looked at the labs and said that I had an 80% chance of sjs, but then thought it was not because my eyes were not dry. He did the skin biopsy right then and there, and admitted that the derm noted in my record that I was self inflickting (grrrrr), but that he knew that there was something else at play. He was so kind, but then had a family emergency and was out for a while. After more butting heads with the other pa, I was finally sent to internal medicine. I still have a few spots on my scalp that have not completely healed. Abnormal scabs form, and eventually slough off, expose tissue, reform and over and over.
Sorry about a very long and detailed post, but I am beginning to feel that the most helpful clues are to be found in the smallest of details. Do please let me know of any more similarities. Did anyone address your skin issues?
I should also mention that I began noticing last summer that any cut or burn on my skin took a long time to heal.
I am so glad that you enjoyed my comment about Ted Bundy. Thanks for being soooo sweet. I'm off to google "Lupus-overlap"!
