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Thread: Diagnosed with Lupus, yet ANA is negative

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    Default Diagnosed with Lupus, yet ANA is negative

    Hi Everyone.

    I was just diagnosed with Lupus by my rheumatologist, yet my primary care does not think I have it because my ANA was negative. I realize you all must be so tired of reading everyone's symptoms, but I really need some answers and would be very grateful for anyone willing to share their thoughts.

    20's

    rashes after being in the sun (started in mid 20's, never was problem before)
    horrible puffy rash on both legs from knees down (went away with hydrocortisol)
    hair began thinning (no patches, just overall thinning out)
    ringing in ears
    carpel tunnel
    muscle fasticulations
    low WBC
    livido reticulitis
    eyebrow and eye lid will puff up like balloon for a day or so then go away
    constant fatigue
    all other blood work fine

    30's

    episodes of tachycardia
    elevated sed rates 44 and 40
    severe peripheral neuropathy (doctors thought it was MS, but MRI of brain was clear)
    (numbness, tingling, incorrect sensations etc)
    severe jerking/twitching
    restless leg and periodic limb movement disorder
    sharp stabbing pain in chin
    central sleep apnea
    bruising easily
    granuloma annulare
    swollen lymph nodes for no obvious reason
    heart burn
    pain in chest that i don't think is related to heartburn
    sudden fevers
    IBS
    joint pain
    muscle spasms
    muscle cramps
    muscle fasticulation
    muscle pain (burning)
    waking up with stiff joints
    feeling of electrical currents running through limbs along with low grade fever
    chronic hives (just about every day)
    extreme fatigue
    brain fog
    rash on face, neck and legs after hot shower
    ANA negative

    40's

    all of the above plus
    malar rash
    swelling of ankle
    tendonitis
    vestibular neurtitis (violent vertigo)
    chronic low grade fevers especially if I go out in sun
    feel like I'm coming down with flu if I push myself even though I have not caught anything.
    Pain in feet becoming severe
    Occular Migraines
    Regular Migraines
    mouth ulcers
    severely dry eyes
    fatigue is now debilitating
    ANA positive speckled 1:40
    elevated CH50


    so long story short, my ANA was negative twice and once it was positive at 1:40. my doctor knows my mother had an autoimmune disease with a much higher ANA titer and he seems to think my malar rash (along with the other symptoms) really points to lupus. he put me on plaquenil 400 mg which I just started.

    I am certain I have some autoimmune disorder and it sure does look like lupus, but my primary care said with two ANA's coming back negative and the other being so weak, she doubted I had it. The subsets were all negative as well. Please help. I don't know what to think. I just want to know what this is, so I can be proactive about it.

    I should also mention that I have been tested for lead, vitamin deficiencies and lymes and that all came back fine.

    Any thoughts on this would be tremendously appreciated. Thanks.

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    Default

    Well, so far no thoughts on my situation. I hope my user name isn't offending people, but it's what I've always called myself long before I ever knew what lupus was. It helps me to have a sense of humor about it.

    I had also posted something in the Introducing section several weeks ago and it said my post had to be approved by a moderator. So far it has not shown up. Maybe I should find another forum.

    All the Best,
    Blotchy

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    I have thoughts. But I probably can't help much except to provide support. I am in a pretty simalar situation. This has been a 10 year journey for me. My sister also has lupus with several positive ANA. I won't write all my symtoms down because most are extremely similar to yours. I have even gone without treatment for 3 years, and currently need to return due to worssening symptoms. Your post is there though, btw~~~ I just wanted to say. I am on SSD due to my Lupus diagnosis, which was later MS, then Lupus, than Connective Tissue Disease, then, Mixed Connective Tisue disease, Then MS, then Lupus Like Syndrome (does that even exist LOL). This is when I gave up. I went on pain mangagement for 2 years (this did not go well). A year and a half ago, I stopped any treatment at all. I am in a new state now and need to find a new Rhummy. I have a new philosiphy. Obvioiusly I have lupus. I only had a positive ANA one time, in my 30s, but I fall into that small percentage of people who don't always have the positive ANA. HOWEVER, I don't care how the doctor labels my lupus. Plaquinil was very helpful to me for several years in the past. There was also a time I needed Methotrexate in the past. These medications improved my quality of life. I spent so much time focusing on them "naming" lupus than on me getting the right treatment. I became angry and resentful almost over this frustrating and common experience. For me, I must now focus on getting treatment that helps. Rhummys that listen can be really hard to find. I suggest you go with the treatment that helps. BTW you are a step a head of many if you have a Rhummy giving you the diagnosis. Who cares what your GP says. You have the DX from the specialist, the specialist trumps the GP. Best of luck and love!!

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    I am providing you with an article about "ANA Negative Lupus" as this condition does, in fact, exist. Your doctor is NOT supposed to use the results of one test to diagnose or not diagnose Lupus. If you ANA is negative, but you have other signs, symptoms, labs, that do suggest Lupus, then you most likely are among those who have ANA Negative Lupus. Here is the article:

    In simplest terms, ANA-negative lupus is a condition in which a person’s ANA – or antinuclear anitbody – test comes back negative, but the person exhibits traits consistent with someone diagnosed with lupus. The ANA test is used to screen for lupus, not diagnose it.
    Typically, if a person tests positive for the antinuclear antibody, it means only that the person could have lupus. Further tests are needed to determine if a person actually has lupus. Those include tests for Sm (Smith), Ro/SSA (Sjogren's syndrome A), La/SSB (Sjogren's syndrome B), and RNP (ribonucleoprotein) antibodies.But in rare instances, some patients exhibit traits consistent with lupus, specifically these four, which unequivocally diagnose SLE:
    • High titer anti-double stranded DNA antibody
    • Anti-Sm (Smith) antibody
    • Biopsy-proven kidney disease
    • Biopsy-proven skin disease

    Furthermore, antibody tests and symptoms go hand in hand. Antibodies alone do not diagnose the disease. If you have all four of the above referenced traits, you will, most likely, be diagnosed with SLE. If not all four, than any diagnosis is presumptive. It is presumed the patient has lupus, even if the ANA test comes back negative.

    The general consensus is that ANA-negative lupus is not a common occurence. Often doctors will give this name to patients with “lupus-like” disease. Some doctors might call it “mixed connective tissue disease,” “undifferentiated connective tissue disease,” or “forme fruste lupus” – or “hidden lupus”. Each of these, however, has specific and separate meaning and describes different forms of illness.
    So, yes, ANA Negative Lupus does exist. However, more importantly is the fact that It is never critical to say definitively that a given patient does or does not have lupus. What is important is to evaluate the current symptoms, to put the symptoms into an overall context that includes blood tests, duration of symptoms, other illnesses, and medications, and to develop a treatment plan based on the total information rather than on a blood test alone.”

    I hope that this has been helpful to you. Please let us know if you need anything further!!
    Oh, btw, no..your name, in no way, is offensive. What is happening is that we have only two moderators now due to illness of the other moderators and other circumstances which keep them from being able to come to our site. These two remaining moderators are also, themselves, dealing with this disease and can sometimes not be able to post as often as we like. But please know that no one is ever ignored here, every question is important to us, every member is part of our family. Sometime, however, we have to ask for you patience and your understanding if your query is not answered quickly. Thank You So Much

    Peace and Blessings
    Namaste
    Saysusie

    Look For The Good and Praise It!

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