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    Default so frustrated

    i had a biopsy done of my rash however on the day it wasn't flaring too badly. The results have shown seborrhoeic dermatitis which isn't what i have! my rash flares when my joint pains are at their worse. I'm devastated i thought this would be the key to getting early treatment and starting to move forward with Lupus but it has left me feeling lower than i ever have been before. How ill do i have to get for a diagnosis? My blood work is so far only showing a borderline c4 and low lymphocyte count, everything else normal. Symptoms- fatigue, migrating joint pain, malaise, rashes, muscle pain, tingling, twitching, neuropathy sensations, depression, anxiety, nausea. It's so obvious i have early lupus i am being made to feel like a complete hypochondriac

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    I have never had a formal diagnosis, but I was informally diagnosed by a Dr. many years ago. What I am trying to say is that some of us never get formally diagnosed, but are diagnosed informally by our history, symptoms, etc.

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    Saysusie (04-19-2014)

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    Tests never occur on flare days, test results never show conclusive results. It takes months and years to establish the pattern that gives you a history. Rest easy and please give yourself a chance to adjust to a new lifestyle..

    Mikey you can do this. Take things one day at a time, get plenty of rest, take walks for exercise. Do what you can to feel healthy.

    Above all have faith in yourself that you can be strong and carry through

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    Saysusie (04-19-2014)

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    It's so frustrating as I think I have NPSLE as well and CNS involvement with my neuropathy. One of my first symptoms was overwhelming anxiety leading to panic attacks and I knew something was not right with me straight away. The malar rash comes and goes so quickly no one seems to believe me at all now. I just don't see how 7 months after symptoms bloods are completely normal. I don't know where to go from here, everyone seems to have closed the book on lupus when it's SO blatant that is my problem. I'm sick of feeling crap having no treatment and being made to feel like a lunatic

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    What type of doctor are you seeing? Maybe you need to see a different one.

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    Saysusie (04-19-2014)

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    I was about to suggest the same thing! Perhaps it is time for you to see a rheumatologist and make sure that it is one who is familiar with Lupus and its treatments. Also make sure that he/she understands that nature of the disease (meaning - symptoms come and go; lab results change from normal to abnormal to normal to abnormal to normal etc.); one who knows that labs must be run periodically over a course of time in order to find out if certain results are present and what are your symptoms when they are present as compared to when they are not present.
    Unfortunately, a good rheumatologist who is thorough will do these things and it may take a year or more before a diagnosis is made (this time line is quite normal because of the disease changes so much in each of us). Also, there are many, as Nonna mentioned, who never get an official diagnosis, but whose doctors are intelligent and caring enough that they treat the symptoms anyway to give the patient some relief and some ability to work towards a new normalcy.
    Please know that anxiety and depression are also common symptoms of Lupus (and other auto-immune disorders) so a good Rheumy should consider those symptoms when trying to find an answer to your problems and/or trying to determine if your issue is, indeed, lupus.
    I wish you the very best!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    i have all of your symptoms and more, most days i feel like this, it is a tough disease and sometimes not a fair one

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    Oluwa;
    Your response filled with uplifiting words was beautiful. Thank you so much for sharing it with Mikey and with us!

    Moonbeam; I loved your response also. Thank you

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    i went out in the sun the other day for hours and was absolutely fine. i'm starting to think i may not have lupus for the first time in a long while and that it could be the toxic dental work causing my issues however i know my symptoms still make lupus a possibility despite my normal bloodwork. I see the dental specialist tomorrow so hopefully he will give me further insight into what is causing my ill health

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    just looked through old pictures and realised how bad and blatant my malar rash is, it's not seborrheic dermatitis at all. the dermatologist didn't use a flourescent stain test on my biopsy and i got a letter from the rheumatologist saying he was completely confident i did not have anything autoimmune going on due to my completely negative bloods and inflammation markers. i got a random nose bleed earlier which is another symptom and my joints are agony, the pain moves every second from joint to joint then stops for days or weeks. i really don't know what to do or what's going on i think i'm trying to pretend i don't have lupus when it's so obvious that i do

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