Nasal Crusts (Picture)

[DEE]

jackie my wg specialist worked at ST JAMES IN DUBLIN goggle (weghers st james dublin ) were they did research on wegners through the immuinology department dont know if this is any help i know he still goes over to ireland several times a year
im seeing him on the 14th july will ask him about wg consult in ireland for you DEEx

[Jackie]

Thanks Sangye, I keep that in mind. Hopefully the future is bright for you now.

Jackie

[Jackie]

Hi Dee

That would be GREAT, thanks a million.

Hope consultation goes well.

Jackie

[JanW]

Jackie, I have limited WG as well (minimal sinus, major windpipe, involvement) and the important thing to remember is that while the diagnosis is 'limited' damage may occur at any time to any part of your body, so your doc needs to treat your symptoms seriously as well as do regular testing of things like eyes and ears to establish baselines on hearing, eye inflammation or eye disease (if present), sinus/nose, urine to see potential kidney problems, echo/EKG for heart problems.

I hope you get your diagnosis quickly.

[Jackie]

Hi JanW


Thanks, just wondering how did you get you diagnosis and did it take you long. Did you have nasal biopsies and if so did you have to have inflammation before they could be taken?

Thanks

Jackie

[Jack]

Birmingham QE Hospital is a major center for vasculitis research, see my post here - Names & Locations of Specialists for some names.

Have you tried nasal irrigation for the crusting problem? It helps a lot. Do a forum search for titles with "irrigation" or just ask and I'll post something here.

[Jackie]

Jack, I have tried nasal irrigation for the crusting problem but avoid doing this too much as the water annoys my ears and swells the eardrums. Instead I use a squirt of sea water spray and don't have to use as much water. The problem I have is that the nasal crusts lodge under my uvula, wondering does anyone else have this problem? I end up having to use swabs to remvove them.

Jackie

[Sangye]

When you do the nasal irrigation, are you using a neti pot? If so, you have to make sure the water temp, type of salt and salinity are correct.

[Jackie]

Thanks Sangye, I use the bottle neilmed sinus rinse. Water temp etc are all correct.

Cheers

Jackie

[coffeelover]

Jackie,

I have been diagonosed with "limited wegeners" but suffered from tracheal stenosis that almost killed me and continue with the crusty nose, occasional bleeding and stuffy sinus issues previously described by others. I have things fairly under control with meds right now, but would never consider this disease limited or small at all in nature. I made that mistake once and now work with the disease instead of against it on a daily basis. I hope you get the help you need to live as normally as possible. this forum is great for information gathering and we have a wealth of knowledge here with experiences and "been there" situations. Glad you reaching out \!
coffeelover