Has anyone ever heard?

[annekat]

I actually had both done back-to-back. The last thing I remember before fading into the twilight zone was telling the ENT and the pulmy that the one who got diagnosable tissue would get a steak dinner. The ENT won.

Well, that is interesting. I remember that story from you. I imagine your lung involvement wasn't progressed enough at that point to get a good sample. Hence the unproductive coughing. I think it would have been the same with me, though I can't be sure the nasal biopsy would have been conclusive at that point, either.

[Pete]

I had had a chest X-Ray done once the cough started. It showed a bulls-eye shaped anomaly in my upper right lung. Guess the pulmy couldn't find a way to get there...

[annekat]

I had had a chest X-Ray done once the cough started. It showed a bulls-eye shaped anomaly in my upper right lung. Guess the pulmy couldn't find a way to get there...

Hmm. I wonder if anything in my lungs would have been visible that early. But even right before dx, 2.5 years later, the radiologist didn't see anything on an X-ray. The pulmy looked at it once and accepted that, then looked at it again and thought he saw something, and had me get a CT scan. That showed numerous small cavitary lesions that weren't visible, apparently, on the X-ray. It happens to us all a little differently! Weird disease, as well as being dumb.

[Birdie]

It happens to us all a little differently!

And yet with so many similarities that we can all relate.

1) It sucks.
2) It really sucks.

[annekat]

And yet with so many similarities that we can all relate.

1) It sucks.
2) It really sucks.

3. It really, REALLY sucks!

[Birdie]

3. It really, REALLY sucks!

Guessing the suckage would go down if WG were more common and better understood so it didn't require a fight with health care. If you say cancer everybody in the world expects it to be serious even tho many cancers are not terribly serious. The "C" word gets immediate action while the "G" word gets "what's that?"
followed by not much...

[PJ2010]

Hi there all. It took 9 months before I was dx. It began like a cold with a constantly runny nose that was within a week accompanied with a 24/7 headache resembling a hang over type headache. At 5 months had fleeting double vision and fatigue kicking in. At 7 months full blown double vision. At 9 months had sinus surgery. Straight after, still cross eyed started to rapidly loose my vision. Headache still severe. Massive fatigue. Sent to the eye and ear hospital in Melbourne and had 5 days of intense tests. At this stage blind in one eye and 30 percent in the other. Had a pseudo tumor growing rapidly behind the right eye squashing my optic nerves. My left eye was bulging and the pupil was looking skyward.
A biopsy was carried out on the tumor behind the right eye which concluded the presence of the disease.
That wasn't the end of the story, just the beginning.

[Pete]

Hope it gets better from here. Let us know...

[PJ2010]

Pete, that was 5 years ago now.

[Pete]

Good!! Guess I missed part of the story that you posted elsewhere.