What questions

[NannyAlli]

Hi everyone a quick up date as i have been so poorly.. Got to see my doc on thursday and he is now sending me to see an ENT doctor and i ahve to have a chest xray Also i have polyops up my nose ! Ok that said and done I was and still am very ill and i have this cough that taste like sulfer,, yuk yuk..

What questions or tests should i ask for when i go and see this doctor ?

Many thks Alli x

[PatriciaAnn]

Hi NannyAlii

I'm not sure whether you are going to see a consultant you haven't seen before, or whether you are going to see your usual consultant.

What I would suggest is that you go along, tell him all the problems you are encountering - don't miss anything out. Write them down. Take a note of your medication.

Then listen to what he has to say. If he doesn't mention your results then ask about them, what they mean, and ask what treatment plan he has for you.

I'm afraid it is difficult to say ask "x" and "y".

PatriciaAnn

[Wilba]

Hi Nannyalii

Have been reading a couple of your posts and we sound very similar, i was diagnosed with WG in 2007 and have been until recentley on Azathioprine and prednisolone to manage the condition,had my care moved to Addenbrookes in 2010 and it was thought that my WG was in remission and so a wheening from prednisolone was begun.Once i had reduced below 10mg i started to experience my old symptoms of painful feet/hands fatigue and generally feeling crappy this was put down to steroid withdrawl,added to this i started to see blood when blowing my nose (and could taste and smell something not very nice) and as time went on this became a daily occurance with heavy nose bleeds also ,mentioned this at my regular check ups and it was sort of glossed over and once again put down to steroid withdrawl. Went sick from work in feb 2012 and am still off to this day.In oct 2012 saw an ENT doctor linked to the vasculitis clinic at Addenbrookes who confirmed that my vasculitis was active as he could "smell it" coming from my nose. So back on steroids and had my 1st Rituximab infusion in jan 2013 although it doesn't seem to be quite doing it for me. I am still having problems in my nasal passage but have been "douching" daily since october and have found that this helps a lot with the bleeding.

Sorry to leave such a long winded post but it's difficult to sum up in a few words as most vasculitis sufferers will understand,trying to explain how you are feeling often sounds as though your trying to make a drama out of a crisis.

All the best.

[NannyAlli]

Hi and thk you for your replys

I ahve my cheat xray next tuesday 23rd and ENT ON THE 7TH MAY.

Just finished 8 days of antibotics and tbh still feel crappy..

My nose bleeds have stopped but the smell is alful like when u have an infection !

Only time will tell praying tomorrow is better than today xx