After a three year journey, I've come home for good.

[Jaha]

crowneagle,
I am so sorry for the loss of your Dad. It sure has been a very stressful period for you while being stricken with this ugly disease. I'm wishing you all the best with your treatments and doctors, to get you feeling better. Take care of yourself and please keep us informed with your progress.

[debra]

C man, hi... Wow,I'm sorry u had all this to deal with... May I ask what symptoms u had, when they decided on opening you're head? Also in those five years, I'm assuming u were being treated, with atleast pred? Sorry, I will go back and re read... Youre doctor list is to be expected right? Be glad you're in Boston, or rather right near..... The video u included, I had seen and what always seems to be the case in these, is the fact the patient is the one to put the peaces together! C man, again I'm sorry u had to deal with all this, but hopeful things will improve for u... You have great doctors, so that's a lot..... I wish u the best..... Deb.

[crowneagle]

C man, hi... Wow,I'm sorry u had all this to deal with... May I ask what symptoms u had, when they decided on opening you're head? Also in those five years, I'm assuming u were being treated, with atleast pred? Sorry, I will go back and re read... Youre doctor list is to be expected right? Be glad you're in Boston, or rather right near..... The video u included, I had seen and what always seems to be the case in these, is the fact the patient is the one to put the peaces together! C man, again I'm sorry u had to deal with all this, but hopeful things will improve for u... You have great doctors, so that's a lot..... I wish u the best..... Deb.

Isn't that the truth? I'm the worlds foremost authority on my own personal brand of Weggners. The difficult part is explaining it to lay people. Every single case is different. I believe that's why doctors have such a difficult time with it. Biopsy is the gold medal standard and even that didn't do for me until they found the right lesion in my brain. The hospital I was in is a teaching hospital. I actually held kind of a class in my hospital room for the medical students. They were taken aback by my knowledge.

[debra]

Crowneagle, I see you're sleep schedule is off as well...... I'm guessingyoure antibodies were negative as well? Need to go back and read again, its late, or early... I remember Gary from Boston did this with his doctors as well. If I recall correctly he was doing a power point presentation... My long term memory is Realy good, short term not so great.... But yes it seems the patient should maybe put on the lab coat at times..... Well, good night,or morning...... Deb

[Middlesista]

Sounds like you have been doing all the right things for constipation. I know folks get bound up with some of pain medication that is required by some folks but not sure if constipation is association with GPA flair.

[drz]

Isn't that the truth? I'm the worlds foremost authority on my own personal brand of Weggners. The difficult part is explaining it to lay people. Every single case is different. I believe that's why doctors have such a difficult time with it. Biopsy is the gold medal standard and even that didn't do for me until they found the right lesion in my brain. The hospital I was in is a teaching hospital. I actually held kind of a class in my hospital room for the medical students. They were taken aback by my knowledge.

I remember being exhibit A for a dozen or two medical students and interns most days when I was able to tell them about Wegs and its symptoms. I hope some where some day some poor soul with Wegs gets an early diagnosis and is saved a lot grief from our efforts.

[crowneagle]

i hear you with the memory. Short versus long term memory

[crowneagle]

I avoid the pain pills as much as possible. Plus, I save them up for emergencies.

[debra]

C man, I do the same,with anything for pain,I'm scared of becoming immune to any pain meds! Man, this would suck.... Drz, I hear ya... Maybe someday,they will have a nation wide wegeners teaching seminar,that's mandatory for all doctors to attend. Damn, I wish they would at the very least remove the rare label!!!!!! I don't think it is... Just undiagnosed... But this rare label is,in my opinion what stalls things. My doctors,who never heard of it, as soon as they saw rare, they backed off the computer! And said no,u can't cause its rare.... Ya rare my ass. I'm not at all buying it..... Hey a wegeners awareness day,would be pretty cool....... Deb.

[crowneagle]

This might sound foolish but the c-anca test for me is useless and not an economical use of medical resources. I've never tested positive for the MPO or PR3 antibodies. I test positive for C-Anca but that is pretty useless. None the less, they keep the medical system churning income by continuing to use this test.