Symptoms

[moyan]

Thank you Phil

[elephant]

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]

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]

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]

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]

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]

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.