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  1. #1
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    Nov 2007
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    Default new-with many Q

    I am 38 years old, thought i had the flu last may, body ack, dizzyness, and the worst head ack of my life. went to er said it was a migrain, sent me home. three days latter i lost my hearing totally in left ear a little in right. went to doctor said it was from head ack, that i would feel better in a few days. this went on for three weeks till i got in to see another doctor wo called my neuroligist ( i also have a seisure disorder) He did a MRI the next day and the only thing that showed up was swollen lypth nodes.he also sent me for a hearing test, i failed and they offerd me a hearing aid. i went home and called primary doctor and got a referal to an E.N.T. He said it was sudden hearing loss and put me on oral prednisone. hearing cme back normal in right ear and a little in left . i then had three surgerys were they inject steriods directly into ear drum. i still have hearing loss put not as bad. doctor says its up to me about a hearing aid. They then put me on all types of antibyotics for swollen lymth nodes. nothing worked so i was sent to a cancer doctor for byopsy. it came back normal but reactive. All along i am lossing weight, headachs,nusea, diarea, very sensitive to light, and dizzy unable to walk at times. cancer doctor tells me there is somthing going on just not his specialty and sends me to a infectiouse disease doctor. who runs all kinds of test but cannot find a thing.i start to feel better am able to drive. summer goes by i have good days then bad. Then in late sept i start I start feeling sick with a cough. they put me back on antibiatics. i start to feel better then i wake up on morning totaly dissy, body achk, ear presure and a fever. After three days of fighting this my fever would not break no matter what i did. went back to er. this is now october. they admited me ran lots of test and sent in a rumatoligest. ran test , did spinal tap wich also came back reactive. then realest me for the weekend. went to office said i tested positive for auto immune, said one test that is supose to be 0-20 was at 123 in hospital. have slight rash on face, says i have many signs of lupus, headack, dissyness, hairloss,weightloss, musle soreness,I did have joint pain in hands at night but went away with pretisone with ear treatment. i also have had rauynuld for about 4 years. as i left the office i thought he had diganosed me with lupus- put me on 40 MG prednisone and 400MG Plaqunil. I left feeling like i finaly got an answer. well when i returned two weeks later he is now saying he did not diagnose lupus but is calling it connective tissue disease.I told him i was confused that in my first visit he even said that it was SLE becouse it was effecting more than one area. that it is affecting my organs which he then explained to me that my ears are orgains. Now he is changing what he is saying. he did say the test he took after last appointment for inflammation has droped from 123 to 78.has anyone else have hearing loss he said it is a verry rare symtom of lupus . Well i am glade that the steroids are starting to shink lypthnodes just wish i could get straight answer fom rummy. He said i should not worry about what we call it as long as it is treated the same, and that we will see what happens in the future. I go back to see him in a month i wonder what he will say then. sorry so long of a post just new to all this and looking for answers. have went though the board and have read every post, all with very good information. Thanks Dee

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    In a manner, your doctor is correct. I know for many of us, getting definitive diagnosis is important. But that does not always happen and we are told that we have an auto-immune disorder which is treated with the same medications etc. as Lupus.
    Autoimmune disorders are diseases caused by the body producing an inappropriate immune response against its own tissues. Sometimes the immune system will cease to recognize one or more of the body’s normal constituents as “self” and will create autoantibodies – antibodies that attack its own cells, tissues, and/or organs. This causes inflammation and damage and it leads to autoimmune disorders.

    The cause of autoimmune diseases is unknown, but it believed that there is an inherited predisposition to develop autoimmune disease for many of us. In a few types of autoimmune disease (such as rheumatic fever), a bacteria or virus triggers an immune response, and the antibodies or T-cells attack normal cells because they have some part of their structure that resembles a part of the structure of the infecting microorganism.

    Autoimmune disorders fall into two general types: those that damage many organs (systemic autoimmune diseases - such as Lupus) and those where only a single organ or tissue is directly damaged by the autoimmune process (localized). However, the distinctions become blurred as the effect of localized autoimmune disorders frequently extends beyond the targeted tissues, indirectly affecting other body organs and systems. Some of the most common types of autoimmune disorders include:

    Systemic Autoimmune Diseases:
    * Rheumatoid arthritis (RA) and Juvenile RA (JRA) (joints; less commonly lung, skin)
    * Lupus [Systemic Lupus Erythematosus] (skin, joints, kidneys, heart, brain, red blood cells, other)
    * Scleroderma (skin, intestine, less commonly lung)
    * Sjogren's syndrome (salivary glands, tear glands, joints)
    * Goodpasture's syndrome (lungs, kidneys)
    * Wegener's granulomatosis (blood vessels, sinuses, lungs, kidneys)
    * Polymyalgia Rheumatica (large muscle groups)
    * Guillain-Barre syndrome (nervous system)

    Localized Diseases:
    * Type 1 Diabetes Mellitus (pancreas islets)
    * Hashimoto's thyroiditis, Graves' disease (thyroid)
    * Celiac disease, Crohn's disease, Ulcerative colitis (GI tract)
    * Multiple sclerosis
    * Addison's disease (adrenal)
    * Primary biliary cirrhosis, Sclerosing cholangitis, Autoimmune hepatitis (liver)
    * Temporal Arteritis / Giant Cell Arteritis (arteries of the head and neck).

    Autoimmune disorders are diagnosed, evaluated, and monitored through a combination of autoantibody blood tests, blood tests to measure inflammation and organ function, clinical presentation, and through non-laboratory examinations such as X-rays. There is no cure for autoimmune disorders, although in rare cases they may disappear on their own. Many people may experience flare-ups and temporary remissions in symptoms, others chronic symptoms or a progressive worsening.

    Treatment of autoimmune disorders is tailored to the individual patient and may change over time or to deal with changing symptoms. The goal of treatment in all auto-immune disorders is to relieve symptoms, reduce inflammation, minimize organ and tissue damage, and preserve organ function. Often, the medications are the same for various auto-immune

    So, at this point, your doctors will only say that you have an auto-immune disorder and/or a connective tissue disease. For some of us, that is the closest we get to a diagnosis until different symptoms appear or our current symptoms get worse!

    I hope that this has been helpful :P
    Peace and Blessings
    Look For The Good and Praise It!

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