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First Symptom
What was your first symptom that your doctor made you check to see if you have an Auto Immune disorder? I feel alot of my daughters symptoms are so close to allergies and we all have them here. When to know? Also if you have this desease when are you put on med?
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Everyones symptoms are different. Probably the most common would be joint pain and sinus problems. I had joint pain but also lung pain. Some folks suffer from what Docs initially think is a sinus infection for a long time. I suffered from joint pain and I mean really bad joint pain for probably a year at least. When my cough would not go away, after a few months I ended up at a pulmonologist office on a Saturday morning. He tried to make me have TB but when that was ruled out, two bronchoscopies and bingo. If you are having recurring symptons, please have them checked out. Wegs can be masked. What are your daughters symptoms? Meds would start immediately upon positive diagnosis.
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My first symptom was my eye swollen shut but I think I am similar to a lot of people on here that an autoimmune disorder was pretty much the LAST thing that crossed anybody's mind. In my case, it was a good year of demanding a biopsy of the mass protruding from above my eye and dozens of doctors. Finally got a biopsy which came back as intense vasculitis, most likely wegs. And even then (and to this date) it is a constant struggle to get anyone to accept that it is anything other than stubbornly untreatable allergies - including the rheums! I am ANCA-negative though, which "proves" to the inexperienced docs that it's not wegs.
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Maria, there are a lot of autoimmune diseases and the initial symptoms can be just about anything. Even for Wegs the list is very long. I had only increasingly severe joint pain and weakness for about 8 months.
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Initial disease onset I had only skin lesions. Most recent flare had skin lesions and joint pain. It's frustrating - it actually took me longer to be diagnosed with the 2nd flare than with the initial disease onset because the symptoms are so random!
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My earliest symptoms would have been years of sinusitis and sinus infections. But the symptoms that lead to ANCA testing, and eventual diagnosis, would by all of my eye symptoms, eyelid swelling, episcleritis, scleritis, keratitis.
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Mine started with a headache due to sinus problems. It was not until I was suffering from multiple organ failure that I was diagnosed and treatment started the same day.
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My first symtom at approxiamately age 12 was joint pain, red eyes, bronchitis on/off, weightloss, anemia and low backpain/kidney failure. In 2008 my symtoms were sinuses infections, eye pain, hearing loss, headaches, on/off fevers that would come on quick and then leave the same day and joint pain.
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My earliest symptoms were also sinusitis and sinus infections. The severe muscle and joint pain started this past December and was almost unbearable. My diagnosis came in March after suffering a posterior nose bleed on my way to work one morning. Between the time I pulled over and called 911 and them getting there, I had lost nearly half my blood and was in hypertensive crisis (my bp was 260/200). After nearly four days in the hospital, they still couldn't figure out what had caused everything to happen. It took going to an ENT for follow-up afterwards, for her to mention my 'saddle nose' and follow up with a biopsy. A week later I started treatment. I feel very fortunate that I had a doctor that was on top of things to get me diagosed in what is such a short time, compared to what a lot of others have to go through!
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So Dianne, it was the ENT that thought it might be Wegs and none of the other docs in the hospital could figure it out?
Phil Berggren, dx 2003
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