Symptoms

[moyan]

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.

[MCC]

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.

[moyan]

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.

[MCC]

Wow! What made the doctors want you to go to the lab if you had no symptoms? Or was it a health check?

[Jack]

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.

[Brooke]

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.

[Jack]

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.

Perhaps I should add that for much of this time I could not sleep due to pain or not being able to breath and spent a lot of time laying on the couch unable to do much while my marriage fell to pieces.
I think that if I had been in better shape, I could have done some homework and perhaps come up with my own diagnosis.