Hi everyone -
Very recently I started coming up in a rash on my face, and being a member of the new technology based generation, I decided to Google possible causes of the type of rash that was manifesting itself. I found out that I had a malar rash, and read about rosacea and Lupus and decided to go to the doctor, just in case something more serious was going on (I expected it to simply be allergies, because I'm a very allergy prone person, and I've had eczema my whole life). The doctor essentially told me that he wanted to do blood tests to check for Lupus, and if they came back perfectly fine, he would treat for rosacea.
I had my follow up appointment yesterday, and my results were a little strange. He said the specific signifiers for Lupus were negative, but my ANA was positive and certainly points to an auto-immune disease, however he can't figure out which one it is. He also says I have an antibody type and pattern that is extremely unusual and is only found in .5% of the human population. Apparently he is unsure of whether I have Lupus or Sjogren's, or something else. I've been referred on to an immunologist/dermatologist to determine which diagnosis is most likely and whether my skin is actually related to what's going on. I think he suspects Sjogren's but I personally haven't noticed the key symptoms - dry eyes and a dry mouth. I've only really started "noticing" a dry mouth since he mentioned the phrase, which points out to me that I probably don't have one. My eyes have been irritated in the past weeks, and I tried taking eyedrops to sooth them - but I've found its more related to light sensitivity (I've had to wear my sunglasses inside sometimes) than dryness or grittiness, and I most certainly still sweat. The doctor did stipulate that its possible I could do the test again soon, and the more specific Lupus criteria will come back positive. So basically I'm in limbo at the moment. I've had terrible fatigue for a few years now, and quite recently my knees and my shoulders have been feeling increasingly sore.
I'm quite young (very late teens, a uni student) and I'm finding this whole revelation very hard to cope with so far. It's difficult being told that you most certainly have an incurable auto-immune disease, but its downright annoying that its not clear which one it is, and I'm the type of person who really wants to know what's going on, otherwise I panic. Whilst researching the possible prognosis' and the symptoms involved in both Lupus and Sjogren's, I think I have made myself paranoid. I'm now convinced that my hair is thinning (despite there being no evidence for such a claim), that my teeth are going to rot because of a lack of saliva (which as I said, I haven't noticed)...its really getting me down. Am I being silly? I've read accounts of many medications for these illnesses making people gain weight and lose hair and I'm already feeling quite emotional and upset. I really just don't feel like I'm coping well with the prospect of such a life change, because as we all know teens think they are invincible - but now suddenly I'm reading lists of symptoms with the words "increased risk of cancer" and "organ damage" in them and I can't believe this is happening.
Do you guys have any tips for me, dealing with the early stages of diagnosis? Also, I know most people here aren't doctors, but do you think Sjogren's is likely if I haven't noticed its predominant symptoms?