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Is it lupus?
roolyn posted:
Hello. I am a 29 year old female with a laundry list of troubling symptoms that have developed over the past 6 weeks. I would greatly appreciate some insight from an expert or fellow users.

First, I have a family history (on both sides) of autoimmune disorders: Celiac disease, Sjogren's, Type 1 diabetes, and others, and my dad is currently being treated for sarcoidosis. My past medical history includes severe ear infections, persistently enlarged lymph nodes for no obvious reason, appendicitis, back and neck pain (cervical fusion performed in 2010), and undiagnosed pelvic pain. I am severely allergic to sulfa drugs, experienced debilitating "growing pains" as a child, and began losing my hair by the handful in my early twenties. I was also diagnosed with fibromyalgia in 2009.

About 6 weeks ago, I suffered a severe sunburn on my face, upper chest, and arms after spending only a few minutes in the sun. A week later, I began having vision problems and was diagnosed by an opthalmologist with a Roth spot in my right eye. The following week I began to experience overwhelming fatigue, red and achy joints in my hands and wrists, severe morning stiffness, and headaches. I then broke out in a flaming red rash across my nose and cheeks that burned and was warm to the touch. My palms also began to burn. These symptoms are completely new for me. Over the past few weeks, they have been worse on some days and less severe on others. Every day I seem to have a different combination of these symptoms.

What is confusing to me is that my opthalmologist ordered a CBC and ANA panel when he found my Roth spot. Nothing abnormal showed up in my blood work. All of my symptoms seem to suggest lupus, and I know that something is wrong with me. Is it possible that the blood work just doesn't yet show that I have lupus? That perhaps my ANA will turn positive in future but I could still be developing lupus now? Are there other conditions with these symptoms that I haven't yet considered?

I have an appointment with my GP later this week, and I'm so worried that he'll just take one look at my negative ANA and tell me that there's nothing wrong with me. I don't WANT to have lupus, of course, but I do want to figure out what's wrong so that it can be dealt with. Any advice or information you could give me would be greatly appreciated.

roolyn responded:
Well, now I'm really confused. After talking through everything with my doctor, he stated very definitely that I don't have lupus, I might possibly have very early RA (though he seriously doubts it) and that there's really nothing wrong with me. He ordered a whole slew of blood tests (kidneys, liver, thyroid, inflammatory, Celiac, B12, etc., etc.) including a repeat of the ANA. Everything came back "within normal ranges" according to the nurse. So, his plan is:

  • Prilosec for nighttime GERD
  • D3
  • Try to lose a few extra pounds and exercise regularly
  • Keep a food and symptom journal for a while
  • Call him in "several months if I'm still having problems".

Oh, and he essentially reversed my fibromyalgia diagnosis. He said that I have "no classic fibromyalgia symptoms", even though I have ongoing generalized pain, muscle tenderness, fatigue, etc. And he said that my "facial rash isn't like any lupus rash he'd ever seen" so I should just avoid makeup for a while to see if the flushing across my nose and cheeks goes away. Unfortunately, my fingers were not swollen and stiff the day of my appointment, so I'm not sure he even believed that I've been having problems with my hands. The only thing that somewhat concerned him was my blood pressure. It was very high (for me) and I've never had problems with my blood pressure in the past. I'm supposed to "keep an eye on it" but I have no idea what it means. He didn't really talk about it.

So, I'm back to square one. Further back than that, actually, because now I supposedly don't have fibro either. I'm perfectly healthy. Except that my nose and cheeks burn bright red for no reason, my fingers and hands are swollen, red, and stiff, some days I'm so fatigued I can barely hold my head up, and the list goes on. Other than all that, I'm fine.

I guess the only thing to do is wait a few months and ask for more blood tests. He mentioned seeing a rheumatologist, but only if my blood work came back abnormal. Which it didn't. Is there any point in asking for a referral anyway? Grrr. I'm very confused.
KRShipp replied to roolyn's response:
I would make an appointment with a rheumatologist. Start with what you know, if one doctor can't help you, it is time to see a differant doctor. Doctors don't know everything, they have to learn from their patients.
My doctors for years have told me I was perfectly healthy and they wish all their patients were as healthy as I was. But they couldn't find anything that indicated why I was sick. Even when I went to my first rheumatologist, I saw the PA not the M D, I was told they can't to much for arthritis and she sent me away, but they wanted to run a few blood test just in case. By the time I made it home the PA called and wanted to do a few more blood test. Two days later they wanted more blood, and they schduled an appointment with the MD. She diagnosed the Fibromyalgia and the Lupus and the RA. I have such a mild case it went undiagnosed for many years.

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