?Limited Wegeners

[JanW]

That's like me -- which is why when I said to my ENT "hey, maybe my SS won't grow back" he said, "Lightening doesn't strike twice."

I wouldn't be surprised if there wasn't a whole lot of underreporting of blacks with the disease, however, due to lack of access to healthcare, co-morbidity factors (you have high blood pressure and diabetes and WG, and one of the others gets you first), misdiagnosis as sarc (which carries of the same clearly visible signs -- SS and saddle nose).

Now I'll be thinking I'm gonna get kidney involvement. Thanks, Sangye ;-).

[Sangye]

Well join the club! Most of my complications are either unheard of with Wegs or very rare. So it doesn't really comfort me to hear my doc assure me that I'm unlikely to develop kidney involvement. I've been struck by lightning a bunch of times already.

[moyan]

I have asked lab attendant and my pg if I should have urineanalysis and they both say nah. Kidney specialist never mentioned it. I have 50% kidney efficiency, kreatinine is stabilized at that and on my own initiative have bloodwork every 2 weeks, just in case kidneys act up since I am tapering pred. I also have swollen feet, joint pain, blocked ear, can walk 30 meter and then my breath is used so I have to get new by sitting. Is this a case of full Wegener's? Whatever, my approach is to enjoy each and every day. Read once about a little girl with cancer who every day sat with her mother on the bed saying "what was good about today". Some days I use that technique!!

[moyan]

How many types of flu or common colds are there

[moyan]

Jan, I have said it before but: once they find the tool to dx WG, there will be an epidemic !!

[elephant]

Wow, moyan sounds like you are trying to look at the brite side especially what your going through. Sounds like your WG is playing tricks on you. You need to get the kidneys checked often.

[Sangye]

Moyan, even though I don't have kidney involvement, my Wegs doc does a urinalysis at every visit.

[moyan]

Hi el, how is it going? Found that quiet spot yet? Where you can munch your oyster/mango donuts! (Yes, I do watch th food channel )

[Jack]

I've been struck by lightning a bunch of times already.

"It is very rare and will probably not affect you"

Translation for Wegs patients -

"It is very rare so probably WILL affect you!"



It is the early hours of the morning here and I'm sitting coughing over my Laptop. Another damn lung infection! It has been coming on for a while now (good ol denial kicked in! ) so I'll visit the doc today and change my antibiotic. It seems that every time I stop taking Amoxicillin my problems come back again. I wonder if it is suitable for long term use?

[JanW]

Hope you feel better soon, Jack!

Moyan, don't really know why anyone would say not to do a urinalysis -- quick, cheap, easy, non-invasive (the analysis of my bloods is charged out at $700 every other week and the urinalysis is maybe $50). As I have said before, I have two per month and will for the next year.