How did you discover you had a AUTOIMMUNE DISEASE?

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How did you discover that you had a autoimmune disease? What were your symptoms prior? Thank you (:

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  • Posted

    I do not have an auto immune disease I suffer from primary immune deficiency, our symptoms match yours. Perhaps you had not identified this possibility,it is one doctors are very poor at diagnosing
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  • Posted

    Hi, I discovered my problem by accident.  I had been feeling very lethargic for some time, walking up hill or up stairs was almost impossible I would feel dizzy and sick. I had put on alittle weight and just thought old age was catching up early, I was 52.  I thenstarted to feel as if i had flu coming on and this continued for weeks, I eventually went to the doctors who thought I had pleurasy, he treated me with antibiotics but it just got worse.  After another doctors visit he sent me to hospital to get 'checked out' as he was baffled by the symptoms.  I hada cardiac arrest on the hospital carpark and woke up 3 days later on life support.  They had found that I was bleeding into my pericardium which had caused a tamponade.  While they were fittinga drain to this they found some fibres on my heart, I hada full body PET scan and they found the fibres where everywhere, this was retroperitoneal fibrosis, this is part of a group of autoimune diseases called igG4.  This has slowly progressed to MS, which is where I am now.  I will take lifelong imunosuppressants and steroid sparers, I have tried chemotherapy and anything else out there, but nothing changes.  Ask your doctor for a blood test for igG4, also look for high ESR and CRP in the blood results which are signs of inflamtion.  I hope this helps.
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  • Posted

    Hi Nikki, my various auto-immune conditions came out of nowhere. I was sleeping and suddenly had a pain like nothing I had ever felt before. Pain-killers didn't help, but I decided it was nothing and continued my life as normal. It was only after I would get faintness and odd temperatures (one second boiling hot sweats followed by freezing cold) at work that I saw my GP. Ulcerative Colitis was suspected and there followed months of testing, during which I'd start to get intense itching, lethargy and a disturbed sleeping routine. In the end it was confirmed that I have Ulcerative Colitis, Primary Sclerosing Cholangitis and Rheumatoid arthritis. Interestingly, it appears that I probably had these conditions for many many years but they were in an unsymptomatic stage. It felt to me that I was absolutely fine one week and the next I was smothered by all this. I really hope you feel better soon.

    Peter

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  • Posted

    Gary's symptoms first started in May 2014,about 8 months before his diagnosis of Dermatomyositis, with shortness of breath and a lack of energy which got progressively worse. He was not diagnosed until Jan. 2015 after he developed an intensely annoying rash that first presented in a shawl shape around his neck, shoulders, and upper chest. Around the 8th of Jan. a trip to the ER in hopes of getting some relief from the itch his CPK level was around 186; somewhat high but not yet alarming. By Jan. 13 his CPK level hit 19,304 indicating serious muscle damage. After 2 weeks on Prednisone that level had fallen to 9262 which was still extremely elevated by at least headed in the right direction. Still the rash continued to spread from his hairline to his belt line with only minor improvement in the areas around the neck where it first started. His skin was so inflamed that it felt like it was on fire and the itching was miserable. It was necessary for him to undergo several tests to rule out an underlying cancer that might be causing the immune system to be in overdrive. A chest X-ray, an abdominal ultrasound, and numerous blood tests all came back negative for cancer. He was scheduled for a heart dye stress test to rule out any type if heart disease when he passed away suddenly a few days before the scheduled test. It is suspected he had a pulmonary embolism but cause of death was listed on the death certificate as Auto-Immune Disease Dermatomyositis. I urge anyone with similar symptoms to be very agressive in seeking medical attention if they even suspect they might have this terrible disease.
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  • Posted

    Weight loss ,chronic rhinositis & sinusitis mouth pain like teeth where falling out ,night sweats,fever loss of appetite head ache ,nose bleeds,breathlessness,broken sleep blured vision joint pain neck and back pain,crusting of nose and blocked nose. Ear infections. I was Diagnosed with GPA Vasculitis autoimmune disease. A biospy and ANCA blood test was ordered and they discovered it after 7 months of me back and forth to numerous ENT and GP appointments. Under the Hammersmith now at the Renal Clinic having treatment slow steady progress in good hands now😊
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  • Posted

    I was having really painful arthritic feelings in my fingers and my Raynauds had gotten worse. The dr noticed the small ulcers on my fingers that i thought were nothing and knew straight away it was Scleroderma.
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  • Posted

    My hair started falling out and i noticed some patches that kept spreading (and still are). I have been diagnosed with alopecia areata which is caused by autoimmune disease. sad

    I do eat healthy but i think it started from taking Roaccutane tablets for my acne. I have been given a very strong dose and i think it triggered and weakened my system therefore got autoimmune disease .

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