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Do you experience symptoms of lupus but do not have a diagnosis?

Share your experiences of symptoms here.

  1. Yes, I have skin rashes that I cannot relate to a specific food or occasion, for sure stress plays a big role. Most all of my test results are good, only ANA remains altered. Doctors can’t say it’s 💯 % lupus, others say it’s not, one says it maybe... I have a few symptoms like fadigue, brain fog, joints pain sometimes... not all the time and not very strong. I mostly get everything under control with a AIP diet and natural healing methods like yoga and meditation. I took hydroxychloroquine for about 2 years, no improvements on the itchy skin! I’m leaving the medication... and waiting to see what happens!

    1. it can be so tough to not have answers to what is going on. It sounds like you listen well to your body and take care of yourself. I'm glad you're here in the community. - Liz ( Team Member)

    2. I hear you. Early in my journey my doctor called it "pre-lupus" or "early lupus" because they weren't sure yet. Do you have a lot of dryness? Dry skin can be itchy and dry eyes, mouth, and skin can be common in lupus and similar autoimmune diseases. Glad you have found some ways to manage it and I hope you can find a treatment that works better for you! Thanks for sharing. -Ava, team

  2. I am a 66 yr old woman on the diagnosis journey. I have multiple familiar symptoms.
    * chronic headache
    * fatigue
    * hypertension
    * Type II Diabetes
    * chronic kidney disease stage 1
    * apathy and depression
    * GERD
    * Colitis
    * severe vitamin D deficiency
    * joint pain that seems "different' from my osteoporosis and fibro
    * Degenerative joint disease in my spine
    * Osteoarthritis
    * facial rash (currently not active) although my skin is very dry.
    The last symptom along with the headache and fatigue prompted my doctor visit and set us on the search for answers. Fortunately, my Doctor knows me well and understands my most common response to pain is to " suck it up". So when I came to him he took it seriously and began to search for answers. My ANA was positive so now we are doing the more specific lupus panel. Interestingly, my CRP was not elevated.

    1. I'm so glad you're here in the community. Please keep us updated on your results of the panel and how you're feeling. So many here express that response to "suck it up". I hope you have a nice weekend. - Liz ( Team Member)

  3. I started having idiopathic neuropathy not even close to being diabetic. Then my shoulder started to become painful. My doctor found swollen lymph nodes on my collarbone. They tested me for everything my ANA positive and my anti Double stranded DNA EIA came back positive. Yet they say well you’re a male it’s rare for men to get lupus so it must be something else. Yet I have almost every symptom. I am very frustrated.

    1. It can be so frustrating trying to decipher all of the symptoms to reach a firm diagnosis. Although lupus occurs mostly in women it is not rare that a man can have it. According to studies, it shows that 10% of lupus warriors are men. Have you looked into getting a second opinion from a doctor that will look at your entire health profile. A Rheumatologist can help decipher it all and look at the blood tests as well as the 11 criteria that are used to determine a lupus diagnosis. You can view an article to discuss with your doctors. I am sorry you are going through this difficult process. I hope you find a doctor that will look at the entire picture so you can get some answers in your health journey. ~Racquel~ team

  4. Please direct me to some help. I’ve been fighting all of the Lupus symptoms for 8 years and things have gotten much worse in the last 2 years. I saw a rheum today that acknowledged arthritis in my ankles/knees as well as degeneration in my lower back. Two of the Lupus markers in my lab work was ‘abnormal’ but my ANA was negative so I was dismissed. (I have psoriasis, so apparently my ANA is wonky.) Will it ALWAYS show positive in Lupus? I feel like I’m slowly dying and I’m terrified. I can’t continue to live like this while doctors and specialists keep telling me ‘I’m fine’.
    Help. 🏳️

    1. I am so sorry you are going through this, it is so difficult to be turned away when you are in so much pain! You need some answers. I can provide some information around testing, but we aren't medical professionals. This article around blood tests explains the ANA more clearly and notes that some may test negative on the ANA but positive on a test called Anti-Ro/SSA which can explain some symptoms - Please keep us updated on how you are doing, and what information we might provide - Liz ( team Member)

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