Stephanie, I'm glad you came over here to ask some questions. Regarding the hair loss, a lot of us with lupus experience that. I sometimes have chunks come out or it's covering my hands after I wash it, etc. I also get sores on my scalp, but not as big as yours. It is possible that the sores on your scalp are discoid lupus. A dermatologist might be able to help you with diagnosing that.
It's interesting that you mention the V rash on your chest. There was a topic here recently about
the butterfly rash and it came up that most people who responded also had the V rash like what you are talking about
. I also have that and at first I didn't mention it to my doctor either.
It is really important to mention every single symptom to your rheumy - even if you think it isn't related. Also if you can get pictures of your rash or the sores on your scalp to show your rheumy, that is sometimes helpful.
Like bhkhhh said, if you think you have lupus in addition to fibro, don't give up looking for answers. A lot of us had to go through several doctors and sometimes wait years to get an accurate diagnosis. Sometimes it's because lupus can progress slowly over time and the labs don't always reflect the illness, especially in the beginning. But, if I remember right from your post over in fibro, you already have a positive ANA and protein in your urine which can both be present in lupus. It may take a while for your rheumy to sort through all of this and give you more answers.
Feel free to post here all you want - there are other people here in daignosis limbo too. We'll try to answer any questions and we'll be here for you if you are having a rough day.
Take care and let us know how your labs turn out.
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily;
Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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