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moyan
01-18-2010, 03:48 AM
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
01-18-2010, 04:07 AM
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
01-18-2010, 04:16 AM
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
01-18-2010, 04:22 AM
Wow! What made the doctors want you to go to the lab if you had no symptoms? Or was it a health check?

Jack
01-18-2010, 04:51 AM
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
01-18-2010, 06:08 AM
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.

Barbara1966
01-18-2010, 07:15 AM
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.

Sangye
01-18-2010, 09:15 AM
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!

moyan
01-18-2010, 09:19 AM
Thanks Sangye

pberggren1
01-18-2010, 09:29 AM
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.

moyan
01-18-2010, 09:51 AM
Thank you Phil

elephant
01-18-2010, 11:59 AM
First onset of WG symptoms at age 12 ( around 32 years ago)
1. joint pain ( almost every joint, hard to walk on feet)
2. red eye ( esp the left)
3. low grade fevers
4. back pain ( going into kindney failure)
5. lung stuff ( docs thought it was infec)
6' wieght loss/ would not eat
7. anemic
In 1982- cytoxan ??? pills ?? iv cytoxan??? but certainly high dose of prednisone.... chronic kidney failure...creat-2.0
In 1989- kidney transplant- prednisone and cyclosporine
second round of symptoms
Sinus, runny nose
fever that lasted one day
joint pain in fingers
2005
severe sinus and eye pain
joint pain/fever
nose hurt
short of breath/no cough
clogged up ears, decreased hearing/ loud ringing
More symtoms just can't remember but finally diagnosed in July 2008.

moyan
01-18-2010, 12:05 PM
Thank you, elephant.
And I thought I have a serious disease! Reading you, Jack, Sangye, Phil etc. makes me understand how lucky I was being diagnosed so fast!

snooz23
01-18-2010, 12:40 PM
Went to bed a Friday night in April, woke up Sat. morning w/ congested hearing. Tried to treat it naturally (thought it was wax build up or something). Now looking back I had been extremely fatigued for quite some time, but thought it was due to having two children in under three years (they are now 4.5 and 3). Saw an ENT--tried several antibiotics (by the end I had tried around 14). Ended up in the hospital w/ almost complete hearing loss at the end of June. Then passed along between rheumy, ent and infectious disease w/ no dx for quite some time. Referred to Cleveland Clinic, two appts. later found nodules on my lungs. DX Sept. 2009. Pretty much the only symptom was hearing loss, extreme inflammation of my ear tubes and no reponse to antibiotics. Lots more symptoms from damage done, side effects, etc. Hope it will end here....as all of us...hoping for that remission state.

Terri
01-18-2010, 01:08 PM
I would say 2 yrs before dx, I went through several different antibiotics for sinus infection, chest colds upper respiratory stuff.
More fatigued as time went on.
Red bumps and spots that would just hurt to touch.
Joint pain and numbness in fingers and toes and then burning sensation just above my knees.
Night sweats and wheezing at night. Some coughing.
Low grade fever and twice I coughed up bloody chunks that looked like a piece of meat.
Ended up with red bump on leg turning into a large lesion and that's when I went to the ER because the pain was so bad.
A few weeks later after many tests and a lung biopsy tested positive for WG. I had a nice size mass on my right lung.
I would say the six months before actually knowing anything was wrong, I had a feeling that something was going on and that it just didn't seem right. Does that make sense?

pberggren1
01-18-2010, 04:29 PM
Moyan your disease is serious because it is WG and WG is a serious disease not matter how you look at it.

Suzanne, how are you doing? How are your ears doing? Give me a call or I will try and call you during the evening sometime this week.

Jack
01-18-2010, 06:09 PM
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.