Update on pberggren

**drz** · 07-31-2010, 11:58 AM

I have had mixed feelings when they tell me I have some thing really rare or unusual and they start treatment for it and then get results of culture or other tests a few days later and tell me I don't have IT so they stop the treatment. I am relieved I don't have IT (whatever IT is) but wonder why they emphasize IT is rather rare. Maybe it is to help you feel better about them not diagnosing IT sooner or correctly. Isn't WG rare enough? Why do we need more rare complications besides?

**Sangye** · 07-31-2010, 12:04 PM

I've been lucky in a weird way. I've had numerous rare complications but they've all gotten dx'ed right away.

**pberggren1** · 07-31-2010, 03:14 PM

I just collect rare stuff, that's all.

**Jack** · 07-31-2010, 07:28 PM

Yup!
When you have Wegener's, all the rare, unusual and not-likely-to-happen stuff is guaranteed to come your way.

**Sangye** · 08-01-2010, 12:08 AM

Yes, Jack is right! Not long before I got sick, I got to see some white buffaloes (not albino) that were brought to live in Arizona. Native Americans consider them extremely rare and quite auspicious. I was already piling up rare stuff.

Doug · 08-01-2010, 07:05 AM

Originally Posted by drz

I have had mixed feelings when they tell me I have some thing really rare or unusual and they start treatment for it and then get results of culture or other tests a few days later and tell me I don't have IT so they stop the treatment. I am relieved I don't have IT (whatever IT is) but wonder why they emphasize IT is rather rare. Maybe it is to help you feel better about them not diagnosing IT sooner or correctly. Isn't WG rare enough? Why do we need more rare complications besides?

This is why we need to really, really, really, really, really emphasize to doctors that we are Wegener's granulomatosis patients and remind them as often as it takes to get them to consult with out WG team members as symptoms indicate.

If it is WG specialists taking us through this ride, it seems appropriate to pin them against a wall and ask why? I'm sort of kidding.

I am well familiar with this business of "You have xxx, which is so rare the membership of half the medical societies in the western world haven't a clue what it is, and the other half think it's a brand of automobile. The only reason I have a clue is I saw this episode of 'House'...."

Tell me what you think: Should doctors first determine our symptoms are not WG flaring up, then go after these rare diseases they drop on us, or the other way around? Because we are dealing with an immune system running overtime instead of one not working adequately well enough, medications they give us for the next rare disease may well be working against our specific needs as weggies.

Anyone?!