Similar experiences of early lupus or other diseases?
Hi all!
I'll try to keep this brief. I'm just wondering if anyone else had a similar course and if so what your diagnosis was in the end!
Abnormal testing so far:
—ANA positive, 1:320 titer, DFS/AC-2 pattern
—C4 hangs low between 15 and 19 (19 was below the reference range in one assay, but the 15s were in a different assay where 15 is the lowest end of normal)
—TSH in the 4s and 5s with occasionally mildly elevated anti-TPO (14) or anti-Tg (3) antibodies, but levothyroxine did not help with symptoms
—Elevated kappa free light chains (barely) with a normal kappa-lambda ratio
—WBC count slowly declining but normal, bounces between 4.1 and 4.3 lately
—EMG/NC showed minor R ulnar neuropathy
Everything else has been normal (including lupus-specific antibodies like dsDNA, Sm, RNP, histone, Ro, La).
Symptoms in the order they happened over the past two years: GERD, chronic migraine (controlled with Botox), fatigue, joint aches in DIPs and MCPs (and sometimes PIPs), rash across face (doesn't always spare the nasolabial folds but darker patches now do during fevers), daily low-grade fevers (99s, usually, occasionally above 100 in the evenings), little rash splotches on sun-exposed areas on the chest.
The medical team is split. One rheumatologist (second opinion) is certain that this is mostly psychosomatic, that a DFS/AC-2 pattern means that this is not autoimmune, that temperatures in those ranges don't count as fevers, that the rash is rosacea, and that the joint pain is from hypermobility and deconditioning. Another wants to follow me every few months and retest because she thinks that this could absolutely be early autoimmune disease and that it often takes time to tell. Infectious disease is taking the fevers seriously and doing a full fever of unknown origin workup but guesses autoimmune disease or a hidden infection. Hematology, neurology, and family medicine think that this is likely autoimmune.
I guess I'm wondering if anyone else has had a similar set of symptoms or lab results, what your ultimate diagnosis ended up being, and if the specific antibody results ever turn positive later in the disease. (Fortunately dermatology just biopsied the facial and chest rashes for both hematoxylin and eosin staining and direct immunofluorescence at my primary rheumatologist's request, so I might have some definitive answers soon!)
Finally, I really appreciate this community! Your posts have been so helpful! I'm happy to post about my course if this does end up lupus.
And to be clear, I don't mean to ask for medical advice! I'm just wondering if anyone has personally experienced, for example, lupus-specific antibodies turning positive after symptoms like rash and fevers started instead of before. My family medicine doctor said that she had a patient similar to me whose autoimmune disease testing turned positive a year after she started having symptoms, which has led her generally to believe her patients' reports of symptoms rather than assume that they're coming from mental illness, even when the disease-specific labs come back negative. (Nothing against mental illness either, by the way, which I also have!)
Thank you!!! Yeah, my hair started falling out and I started having peripheral neuropathy symptoms since I posted, so rheumatology suggested starting hydroxychloroquine empirically even with just the positive ANA but no specific lupus autoantibodies. I can keep you posted! Praying for you too! 
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I'm glad you have a treatment plan. I do hope it is making a difference for you.
Please keep us updated, we'll be keeping you in our thoughts. ~Doreen (Team Member)
Hi, I have actually been having symptoms for 15 years just not any 2 or 3 at the same time until recently. People used to make fun of me because I was allergic to the sun. I have a forever fever for no reason I am always in some sort of pain I’ve had migraines for so long I can’t even remember, I have neuropathy and my joints hurt so bad all the time. Drs have told me it’s all in my head! I’m lookin g for attention. There can’t be that much wrong with me! 2 months ago my heart decided it didn’t want to keep the deal we made when I was born any longer. So I went in to Tachycardia and stayed there all day I stayed between 120 and 160 even when I was in bed. I take pills for it now & about a month ago I got out of the shower and put moisturizer on my face and screamed because my face was burning it felt like it was on fire! I have never felt such as that on my face before. I had to wash my face again immediately and a day later I got an ulcer on the roof of my mouth, then another one and two under my tongue and then two on my tongue and then The sides of my mouth cracked open and I found out that is called angular cheiliti. My tongue is dark and looks like the surface of the moon, deep crevices and dry looking! It’s horrible. I put the face and mouth symptoms in the search bar and it popped up Lupus and I thought NOPE! Can’t be so I kept looking for 2 days and I just kept getting Lupus so I finally looked up lupus and read all of the characteristics of it and my head was blown!!!
I went to the urgent care because I just couldn’t take it anymore… I needed to know
So now I am waiting for the tests to come back The tested me for 3 different autoimmune disorders and she said She’s pretty sure I have sjogrens
Oh and out of the blue… I am allergic to ice cream! Who do I need to put in a complaint ticket to?
whew I’m sending you gentle hugs! You have been going through it and it has been very hard I’m sure. I hope all of the blood test give your doctors a little help as to what is going on. I hear you on the complaint ticket. We need a box or a number or something! ~Racquel~ lupus.net team member 
, I just want to echo Raquel's words of support and empathy. I do hope you get some answers (and treatment options!) very, very soon. And, frankly, I think you have a legitimate grievance to file; allergic to ice cream all of a sudden? Now, that's just cruel of the universe to do to you!
Thinking or you!
Best, Erin, Lupus.net Team Member.
