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Autoimmune Disorders

Also known as Antiphospholipid Syndrome, Behcet's Disease, Dermatomyositis, Goodpasture's Syndrome, Lambert-Eaton Myasthenic Syndrome, Retroperitoneal Fibrosis, Sclerodoma/Systemic Sclerosis

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  • sue73 sue73

    domperidone

    I have just been diagnosed with limited systemic sclerodoma which apparently has affected my oesophagus which in turn has led to bronchiectasis (though I don't have symptoms for any of this!). I have been prescribed domperidone to stop me aspirating acid into my lungs and making them worse. Any experience...

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  • Please help - overwhelmed and now confused by lab test

    Hi all. I have been experiencing a multitude of usual symptoms, the most prominent being extreme exhaustion, which is only getting worse (when I couldn't imagine it ever could) and a 27lb unintentional weight loss. Anyway, I had a positive ANA (only 1:80) and now my doctor has ordered an immunoglobulin...

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  • Chronic fatigue

    How do you get thru a normal day?  Do you have supportive people around you? What do you say to people who don’t believe you physically can’t work bc the fatigue is so bad due to your illness

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  • domperidone

    I have just been diagnosed with limited systemic sclerodoma which apparently has affected my oesophagus which in turn has led to bronchiectasis (though I don't have symptoms for any of this!). I have been prescribed domperidone to stop me aspirating acid into my lungs and making them worse. Any experience...

    Posted
  • Dermatomyositis

    An autoimmune condition that affects the connective tissue, of your skin and muscles. A flareup may start with a rash, mine did, on the right side of my neck, which then spread to my face. Fortunately for me, I was lucky it was diagnosed within two weeks of the rash appearing or it could have gone badly...

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  • Just diagnosed with IgG4 disease - talk to me!!

    Hi there! I have just been given the IgG4 diagnosis. I am keen to make contact with anyone on social media who reads this who has the same condition. My name is Nick, I am 55 years old, and live in Bournemouth with my wife and daughter. I have met the consultant who appears best placed to be in overall...

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  • Never sick. Not dying fast enough

    I have multiple autoimmune disorders. I am never ill.   I can't even get a sore throat. I am not improving with medication, exercise, diet and rest.  My doctors do not know what to do with me. I have a mother who died of a similar disorder and six sisters who all died of autoimmune diseases....

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  • All Aboard the Autoimmune Train

    I am 50 yrs old and have been diagnosed with multiple autoimmune diseases/ disorders over the past 2 yrs. I have Autoimmune Hepatitis, Hashimoto, Sjogrens Syndrome and now my rheumatologist is ruling out Myasthenia Gravis ( which often comes with Temporal Vasculitis). I do not get her opinion...

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  • Possible lupus bumps on leg?

    I have Sjögren’s syndrome but have never been diagnosed with lupus. I know the lupus blood markers are normal at this point. However, today when I was in the sun I noticed 2 red spots on my lower legs. They don’t hurt or itch but appeared pretty shortly after coming in from the sun. They are definitely...

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  • Is it lupus included blood tests

    I'll try to make it quick. I went to the doctor for a rash that started last February (during a trip to florida) was diagnosed with Livedo reticularis. I told the doctor I felt exhausted even with 8 hours if sleep and my wrist and knee joints ached most days. The doctor mentioned I have a red rash...

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  • Mixed Connective Tissue Diease

    Hello everyone! I looked on the discussions and didn't see anything related to what I have been going through so I was hoping there is someone out there that can relate. Forgive me for it taking so long to explain.  In January of 2017, I had a major surgery on my left foot/ankle. It did not...

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  • [srs] Already seen doctor. viral infection or autoimmune

    So since april end, i been having persistent on off fever till now.. even on days i not having fever, i feel very warm.. So technically,i am having fever for 2 months already... That is the first symptom. Around two weeks later,i start having ear ache and jaw joint pain. The joint where the top and...

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  • IGG4 test

    HI all I have been tested 3 times for the IIG4 and been positive all 3 times but the doctor told me it's nothing because its not very high. Does that sound odd? I have sjogrens, Gi bleeds, bowel bleeds and Raynaud's Im worried Im not being checked further for the IGG4 disease. Thanks A

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  • Anybody with relapsing polychondritis?

    Does anybody have symptoms with some nose cartilage and ear chondritis that are not fiery red but mainly airway disease? How did you sort out the symptoms of steroid side effect vs disease activity? I think a lot of symptoms are from steroid but cannot prove it and it does not explain 100% of the story....

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  • distressed!

    hi my name is angel. i am so very frustrated an have been for 10 months. in this 10 months ive had 3 positive test results of ANA an RNP. RNP ranges from 1.6-1.9 an the last test showed ANA less than 1:80. ive been told i have fibromyalgia due to childhood trauma. ( which is so hard for me wrap my head...

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  • Retroperitoneal fibrosis new diagnosis

    I have just been diagnosed with this awful disease and it is even rarer in females I'm 59yrs old and the pain omg I have had 3 babies and this doesn't even compare I'm in constant agony and on a lot of morphine while they try to decide how to treat me. They can't operate as it is to deep...

    Posted
  • Autoimmune hepatitis of liver

    I'm a young 27 year old wife/mother of two, who was just diagnosed two months ago with autoimmune hepatitis of the liver. I couldn't believe it. I went to emergency room feeling bad in my body and extremely tired for bout a week or two. I never thought I wasn't coming out. I stayed in hospital...

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  • Research,keep on keep in on.

    There's no doubt that these a re difficult symptoms that a lot of us are dealing with.but there's no alternative than to discuss it and deal with it and go after the truth through research etc etc and just keep working on it and talking about it and listening because let's face it part of...

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  • Does this sound familiar to anyone?

    I have another post over on the shoulder forum, but I think whatever my problem is may be autoimmune because it comes and goes. Here are a list of symptoms: ~Started with chest/clavicle pain about 6 years ago. EMG for heart attack negative. ~ mild pain when writing on a whiteboard (im a teacher) that...

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  • Symptoms For 2 Years, No Diagnosis

    Hi everyone, I've had strange symptoms for 2 years and have been to a multitude of doctors. None have found anything wrong in my blood work, MRI, etc. It started about 2 years ago as itching on my forehead. This itching eventually spread to all parts of my body and evolved into random pin prick...

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  • Lichen sclerosis

    I have LS and am wondering if wine may effect this autoimmune disease. I believe it does agitate it. Looking for feedback here.

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  • I have been diagnosed with, igG4rd.

    I was originally diagnosed, a year ago. I had several second and third opinions. I believe the mass, has been there for six years. I only can imagine, how everyone, is feeling. This has totally changed my life, you have times and you are so tired and you begin, to begin to feel empty. It is very...

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  • Can anyone relate?

    Hi everyone, I have had symptoms on and off now since October and still haven't had a diagnosis. Has anyone else experienced this same set of symptoms? Does it sound autoimmune related to you? -Dizzyness. Not like the room is spinning, but more like my center of gravity is off and I'm being...

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  • What's Your Opinion?

    I desperately need some advice. I am sorry this is so long. I've been pursuing a diagnosis for a longtime but haven't been given anything definite yet. I have seen a rheumatologist for the first time. He gave me several prescriptions and lab orders for blood work and x-rays and I was to return...

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  • Always unwell doctors don’t know what’s wrong!

    Bit of a long one and I don’t even know if I’m in the right place ... I have been going back and forth to doctors and hospital for 3 years! I’ve had bowel problems and joint problems and I am 90% of the time unwell I get a lot of fevers and high temperatures as well as high blood pressure when I’m not...

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  • More disappointment...

    My upper and lower back and my hips are growing greatly more painful every day. So much so that I'm having trouble sleeping because it is so hard for me to get comfy. My legs feel so weak and stiff, I'm afraid when walking that my legs are gonna fall out from under me. And yet again today I found...

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  • Actemra and headaches

    i just injected my second dose of Actemra.  I will be taking once per week.   Can anyone tell me if they have experienced headaches. its more like a pressure type headache.   Any info about your experience taking this med would be much appreciated  ty tgif!

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  • Anti tnf reaction / envriomental reaction advice?

    Hey all i hope everyone is well.  so today and two weeks ago on a monday i was in a shopping centre and my ahnds swelt up and became puffy and sore. I only noticed it was a reoccurant symptom today. Thursday is my injection day so technically in my head the fact that it happened on different days...

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  • Dealing With Health Care Sexism

    Like millions of extraordinarily strong women before me, my symptoms are being brushed off as anxiety, PTSD, and a slew of other BS. Many of you may know at least some of the symptoms well: tingling, nerve pain, hair loss, weight loss, new food intolerances, tremors, fatigue, hot/cold hands and feet,...

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  • Venting My Frustration... and the Nightmare That Is DOCTORS!

    So, I've been sick, fighting an invisible illness for eleven years now and let me tell you my experience in the last two months and the amazing capability of the health system (which is zero capability if you were wondering)... Depression, Extreme Exhaustion, and Extreme Brain Fog are the three...

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  • Lots of strange symptoms, is it possible its auto immune?

    Hi, I have been posting in different area off and on trying to figure out what might be going on with me. About a year ago now I woke up with a pain in my side and what looked like a visible pull or something. Ever since then I have had weird symptoms that never go away.  My main symptoms are tingling...

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