Doctors - Sydney, Australia

[katwoman]

I use a nasal flush and have a thing called 'nozeoil' - believe its sesame oil or something similar and also lubricants but i find the crusting is way up of the back area of the nose and forms a solid bloody crust. They seen to go along the sinus passage (I hate talking about this its gross but I guess we are all the same boat) they are tubular and normally 4cm or even longer in length. When and if I can get to them (my goodness I can feel it coming away from the sinus walls and feels wonderful when out but doesn't take long to reform) as I mentioned it completely seals up so nasal sprays and lubricants don't really help - I need the scissors and separator my ENT use.... what fun!

Like you Jack the sinus was my original initial symptom and seems to be again.

[Jack]

I used to use a 50ml syringe with an extension tube on the end to get right up into my sinuses with my own mix of salt and sodium bicarbonate. It stings a bit at first, but it is surprising how much crusting warm saline will remove. I used to get through the best part of a litre per session with my face held over a bowel.
I know what you mean about the extent of the crusting, believe me I've been there and although it all sounds a bit gross to discuss, it is valuable information for others.

[katwoman]

It is definitely valuable information.

Jack, its great hearing from you about your sinus issues with WG, sometimes I wish they would just take the nose off all together and on top of all the nasal crusting I miss taste, it comes and goes but more often then not it goes!

[Jack]

Don't loose hope on that one! I lost my sense of smell completely for around 5 years, but it came back again! Not quite as good as new, but not bad.

[elephant]

I visit the ENT quite often. Had four sinus surgeries under two years. I use a sinus rinse twice a day. If I don't use it, I feel like I didn't get the crap out. My sinus is better, I still have diminished sense of smell/taste.. I love food! So what a bummer. I usually have to eat strong flavor food like salmon, onions/garlic( family moves to the other side of the house), alot of herbs/spices and dark chocolate.

[coffeelover]

I too rinse twice a day with a salt/saline solution. (recipe is on here from a past thread)
It does make things better than when I do not rinse, but it never clears the problem completely.
I really hate having to do one more thing in my day. Pills, nasal irrigation, shower, feed the dogs, exercise, work, make a meal, grocery shop, keep on on meds (be sure not to run out) keep up on milk and bread, it is so difficult to make it all work!
LIsa

[Jack]

I sympathise Lisa. Sometimes, just getting through the day can seem like a daunting task.
How do you use the rinse? Using the syringe method I described, the solution would go up one nostril and down the other. Not sure if it is supposed to do that, but it cleared out the whole system.

[andrew]

Anywhoo I'm rambling, he asked if I had an appointment to see my local rheumy and I mentioned I had got a referral to an immunologist - he doesn't seem to think its worthwhile the trip and said because I'm already diagnosed he will just put me on treatment rheumy would and refer me back to local rheumy - just wondering what anyone else thoughts is on this?

Go anyway. You have nothing to lose. Make a list of all the questions that have been bugging you and take them with you. Tip: Prioritise them. The guy will probably be busy and his appointment slot may not allow for the full list to be answered. Make a note of your treatment regime/drugs and see what he thinks (he'll ask you what meds you're on anyway). Let the Immunologist decide for himself if he needs to see you or if he needs to refer you.

Another tip: it might seem silly, but prepare something for when/if he asks you how you've been feeling. My mind usually goes blank and I say "oh...fine thanks" even though I may have just come off a dose of pig flu

Question: Did you need to get a referral for the appointment? You'd better check if you aren't sure. I have to have one for my Immunologist.

[katwoman]

I do have a referral for the Immunologist, just waiting to hear back, apparently there is a team that valuates patients and then classes them on urgency before appointment is made, hopefully hear back from them next week.

I totally need to do a list, like you I go blank with not only how I have been feeling but also the questions I wanted to ask.

I have an appointment on Monday with Rheumy, I already know that it will be back on meds, to date all I have been taking is Bactrim. Part of me was hoping that if I went to Immunologist he would tell me no need for Pred - that's probably wishful thinking I know.

[timbo vic aust]

lisa i was the same too i had too many fingers in the pie so to speak i had ent thorassic and hospital doctors all passing the buck and not commiting to the disease but all of them saying we all think you have the disease; it took the professor of rheaumatology at monash medical centre clayton to take over and finally diagnose and start treating me properly. he could'nt believe they did'nt get rheam involved earlier you keep your chin up and be strong i feel the same way at the moment i am normally a very active person you have to tie me to a chair to keep me still . them all of a sudden i am getting around like an old man and struggling full on with fatigue and bad muscle and joint pain mainly in my legs ..
pS; and yes i love coffee too