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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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    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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    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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    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
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    Saysusie
    Look For The Good and Praise It!

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    I saw a Rheumatologist privately after hassling my GP for a referral and he explained that my symptoms and bloodwork sound more suggestive of Post Viral Fatigue or CFS syndrome than SLE but referred me to a dermatologist to assess the rash i had. My only abnormal blood work so far has been a slightly low lymph count and one low C4 but everything else has been normal and everything's perfect in my most recent bloods. My ESRs have been 2 and 5 even when i've been in terrible pain with joints and muscles. I have had ANA done 3 times since November and all have been negative as well as a negative ENA panel.

    I really hoped that the biopsy of my facial rash would help me get a diagnosis and push things through but he said that it wasn't consistent with SLE and was more suggestive of Seborrheic Dermatitis. I get a malar flush that comes and goes very quickly and is especially bad in heat or when i drink alcohol. I am not in constant pain but i'm constantly fatigued and feeling crappy (malaise). My first symptom was overwhelming anxiety and panic attacks and from there things developed into further symptoms migrating athralgia's, myalgia, nausea, vomiting, dizziness, stinging pains, muscle weakness, brain fog, raindrop sensations, strange spells of breathlessness, head pains, pins and needles, chest pain, i even broke out in hives on my arm after being out in the sun one day.

    I just don't know where to go from here. I am completely CONVINCED i have Lupus and not being diagnosed is a lot more depressing than actually having a diagnosis, treatment etc in place. I'm in no mans land at the minute

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    Just remember a lot of us live and have lived inthat no-man's land for a long time. I had lupus for 30 years before I got a diagnosis. Keep on trucking, believe me I know it's hard. I am there too, especially today.

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    it's so frustrating as although the biopsy showed seborrheic dermatitis the rash takes a malar shape when it flushes and perfectly matches up to other photos i have seen of SLE rashes. My illness began after i had double root canal surgery and i am considering having the teeth extracted by a dentist, i have read several articles online about root canals causing illness's including Lupus in certain individuals who have seen improvements upon having the teeth removed. It might be a long shot but i'm willing to try anything at the minute.

    i'm trying to cut gluten out my diet too but i just don't understand how they can possibly say this isn't Lupus. Is it possible to have the symptoms without the bloodwork and organs being affected? i'm guessing that this will come as time goes on. Such a frustrating time at the moment. I have read several posts about people having bloodwork come back okay early in the disease but even then it seemed there'd be something more abnormal than mine such as an elevated SED rate etc. It just seems too much of a coincidence that i was in perfect health before the root canals and began feeling ill one week after i had them done, i remember the moment i felt ill perfectly and it hasn't improved since.

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    Mikey I can really empathize with you. The Drs. made me feel like a lunatic and a hypochondriac at first too. That is until I found a compassionate and caring Dr. Too bad he retired some years ago. He was the best! I agree that you should start looking for a new Dr., preferably a compassionate and caring rheumatologist.

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