Not sure but think I have this

[pony56]

25 yrs ago went to ENTER Dr. He suggested I had to have used cocaine to have the hole in
my nose. Never had tried cocaine. Now I have inhalers, blood in urine, nose, cough and have had pulmonary tests. Now my body aches constantly so much it's almost impossible to function but I do. I have rashes on my hands constantly . Pulmonary test showed mild breathing problems. I have severe IBS symptoms also. Has anyone have similar symptoms or help in finding out how to get tested. They now have me on prednisone and body didn't hurt at all yesterday and I actually was able to blow my nose productively.

[Dirty Don]

Welcome pony, that doc was an absolute idiot. I've had similar past experiences from some docs...it all led to the WG in the end game, but some of it was just plain ridiculous in their dxs of what I said I was experiencing. So, first lesson: get WG experienced docs, and really good ones if you can! You need a rheumatologist generally speaking, but others have used pulmonologists, etc. as their main doc...as long as they understand the effects and history of WG protocols. The pred will continue to help you at higher doses but it does not arrest the disease...there are other drugs, stronger and more effective, that do shut down the auto immune system so it will stop attacking your organs for the meantime. You or your docs need to consult the Vasculitis centers in Australia...there are a number of 'down unders' on here who will kill me for saying that!, BUT, they are all well experienced, caring, and may be able to give you better advice on who and how to access WG docs there. Best to you, stay on here for help/vents/sharing as it benefits all!

[mishb]

Hi Pony and welcome.

Yes, pred is our friend. I love how it takes the pains away......others hate the stuff, but without it - who knows where we would be.

I can't see where it says that you are in Australia, but that doesn't matter.
Don, we don't actually have Vasculitis Centres in Australia - unfortunately:crying:

What other medications/treatments have they started you on Pony?

[Dirty Don]

I can't see where it says that you are in Australia, but that doesn't matter.
Don, we don't actually have Vasculitis Centres in Australia - unfortunately:crying:

It doesn't...I must have been on the reply before that one! And, what are you doing up this early? LOL! Want some coffee?!~?

[annekat]

Welcome, Pony. How annoying that a doc or anyone else would jump to that conclusion about your nose. I have to wonder how many people have assumed that about me, because I have a saddle nose from WG. My glasses hide it pretty well, but you can see it if you really look.

Anyway, you have come to the right place, either to find out if you could really have WG, which it sounds like you definitely could, or for getting whatever info and support you need from others who have been and are there. Yes, try to find a rheumatologist, or even an ENT who knows something about WG and can possibly biopsy your nose for evidence of WG. Then, maybe he could help you find a good rheumy who has WG experience. If you tell us where you live, some members on here might be able to recommend someone, as well.

[mishb]

And, what are you doing up this early? LOL! Want some coffee?!~?

Thanks Don, I'll pass on the coffee - can't stand the stuff :razz:

Always up at 5.00am on a weekday and on a train at 6.00am to get to work.
At work by 7.20am and then I can log on to the forum until others start coming in at about 8.30.

I would log on in the hour plus that I have on the train but the reception isn't very good, so I facebook during that time and check out the WG groups on fb.
The computer servers at work are speedier than my iphone.

[MikeG-2012]

25 yrs ago went to ENTER Dr. He suggested I had to have used cocaine to have the hole in
my nose. Never had tried cocaine. Now I have inhalers, blood in urine, nose, cough and have had pulmonary tests. Now my body aches constantly so much it's almost impossible to function but I do. I have rashes on my hands constantly . Pulmonary test showed mild breathing problems. I have severe IBS symptoms also. Has anyone have similar symptoms or help in finding out how to get tested. They now have me on prednisone and body didn't hurt at all yesterday and I actually was able to blow my nose productively.

I think with how I felt prior to diagnosis, and I would have given the ENT doc a broken nose had he accused my of using drugs.

Go go find a specialist and have them do chest X-ray/ct, blood work for ANCA count, C-reactive protein, and sed-rate. Those are the key indicators. If you have kidney issues, they might want to do a kidney biopsy to test for wegs.

Find a good specialist, dump the worthless docs. If you have wegs, you will need superior care from a team of docs who know the disease and will get to know you!

[Alysia]

welcome to the Forum. it can def be WG. do you also have a saddle nose ? I think that a saddle nose is kind of a "stamp" of WG. The IBS can be an IBD which can be a WG involvement in the colon. I have it. good luck and update us.