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Symptoms
I came to think (and it hurts) that if we made a thread with all our symptoms, short and once for each only, maybe we could even refer docs to it. I know I have some that neither of mine knows. We could also print it, highlite and show and tell.
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I had a constant runny nose, joint pain that started in my knees and spread round my body, night sweats, fever, headaches, constant tiredness, swollen itchy feet with a rash.
When I had a CT scan there was a mass in my kidney and smaller ones in my lungs. I've been told I have an unusual display of Wegener's in my kidneys.
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Hi Mandy, I did not notice any symptoms at all, and refused to go to lab for general testing, they babbeled about cholesterol and diabetes, never thirsty and knew what I ate! Eventually one of them mentioned kidneys, so I went and there it was, down to 50 %, Sheer luck and I was diagnosed 1 day later at the hospital where my GP sent me immidiatly.
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Wow! What made the doctors want you to go to the lab if you had no symptoms? Or was it a health check?
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Huge problems with sinus and nose.
Skin disorders, weeping blood blisters, calluses, wart like things, red discoloured spots.
Bloodshot eyes.
Rheumatic pain in leg and arm joints.
Finally diagnosed when kidneys failed.
Lung involvement came later.
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started with chronic cough, sinus problems (always having crusting and gunk come out with my sinus rinse), My ent did not believe me at first that I had not had sinus surgery before due to all the scarring in my nose, after my first sinus surgery, i developed saddle nose deformity, i had a second sinus surgery and then also a third surgery to correct my saddle nose. All of my blood work and biopsies were negative for wegener's, that is why i was never diagnosed. I went to mayo clinic, and I also have subglottic stenosis, and couple tiny spots on lungs. Had bronchoscopy. Finally did another biopsy and doc at mayo said it looks so much like wegener's that is was enough to diagnose me with it. So, I started on prednisone and methotrexate about a month later.
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My problems started with clogged ears. One week later I lost hearing in one ear and two weeks later I lost hearing in the other ear.
Next was dry chronic cough. Then, X-rays showed huge lesions on my lungs.
I was diagnosed but received no treatment until two weeks later in the ER.
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Increasingly severe migratory joint pain & stiffness-- my only symptoms for about 7 months
Increasing weakness, fatigue
Dry cough
Shortness of breath (becoming extreme difficulty breathing)
Progressive, profound anemia
Night sweats
Low grade fevers
Insomnia
Vasculitis rash on legs
These were my symptoms at diagnosis. Lots more since!
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Fast onset - OK to almost dead in 6 to 7 weeks
First it was sore and achy joints
Then increasing fatigue and constant throbbing headache
And then totally plugged sinuses - plugged like concrete - couldn't breathe through nose
Lost about 50 pounds
Very weak
couldn't lay down, sleep, sit up, taste, smell.
could barely swallow or talk
increasing hearing loss in both ears
this was all at diagnosis - just what I could feel.
Oh and coughing up bloody mucus as well.
And as Sangye said much more symptoms since.
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