Help! Please help... desperate...

[Aylasnan]

I still think I may have Wegener's although pulmonoloist disagrees. Started coughing up blood in August 2015 after years of severe coughing and green phlegm (non bacterial). I've had chronic rhinitis year round for 10 years plus and have awful sticky red sore swollen eyes. However, skin and blood tests are negative although I strongly suspect dust mite or dog allergy. Nothing makes sense. Scans revealed multiple nodules on both lungs for which I've been on predisone for 5 months now but every time the dose is lowered the phlegm turns green again and I start coughing up blood again. Bacterial and fungi tests are negative and Ige count was low 19 ? Anca test was negative and biopsy of nodules showed no granulosis.... help what's going on? Anyone have any ideas at all? My symptoms say one thing but tests reveal nothing.

[Middlesista]

Have you looked into a consult for a second opionon at one of the vaculitis centers or with a specialist? Early diagnosis is key so I understand why you want this figured out for you. I hope you do not have GPA

[Aylasnan]

Hi Middlesista, thanks for the reply What is GPA? I have asked both my lung doctor and my GP to refer me to a rheumatologist but based on my blood results they say there's no point. I disagree. I have seen an ENT and all is ok there, no polyps etc. Pulmonologist has diagnosed COP cryptic organizing pneumonia which I feel is a cop out (forgive pun) diagnose when they don't know what's causing it. I think blood tests showed no sign of vasculitis I'm so very confused. Researched everywhere and no one seems to have all my symptoms except those with Wegeners.

[Birdie]

Hi Middlesista, thanks for the reply What is GPA? I have asked both my lung doctor and my GP to refer me to a rheumatologist but based on my blood results they say there's no point. I disagree. I have seen an ENT and all is ok there, no polyps etc. Pulmonologist has diagnosed COP cryptic organizing pneumonia which I feel is a cop out (forgive pun) diagnose when they don't know what's causing it. I think blood tests showed no sign of vasculitis I'm so very confused. Researched everywhere and no one seems to have all my symptoms except those with Wegeners.

Get bitchy. Really seriously truly over the top bitchy. Bust their chops. Raise a fuss. Scream and yell. Demand consults with specialists. Force the issue. Don't let up. Keep doing it until someone puts in the effort to figure out the problem. And while you're doing that, keep searching for an answer on your own, like you're doing here. Ask specific questions.

My symptoms were more serious and increasing rapidly, plus I dumped the docs with listening disorders choosing those who were more dedicated, until a periodontist figured out Wegener's. I didn't have to get bitchy, but I had to keep at it for five months pushing for quick appointments as well as finding different doctors until I got good docs. So listen to the broken record (me) and don't accept "I dunno what's wrong with you" from any doctor. If a doctor doesn't know and doesn't have an immediate plan to figure it out, then dump em in the dirt and look elsewhere.

Oh, GPA is Wegener's. Granulomatosis with Polyangiitis. As you already know, your symptoms MIGHT be Wegener's, might be something else. Might be worse than Wegener's, might be not so bad. Get bitchy.

[Aylasnan]

Thanks Birdie Must try harder at pushing it haha.. they always talk me down and believe me, I try... I suppose what I'm is it possible to have Wegeners or allergies when all tests come back negative? I have a bronchoscopy due next week and pulmologist says if that doesnt turn up anything it will be classed as chronic bronchitis which is rubbish as totally ignoring the sinus, rhinitis problem.

[Birdie]

possible to have Wegeners or allergies when all tests come back negative?

Anything is possible until you get a solid diagnosis. Even then??? Keep questioning. Could still be wrong, or correct but with something else added on. Talk to Dale or vdub about that, they've both got a bunch of... and collecting more.

[Aylasnan]

Have you ever heard of anyone with my symptoms having negative results?

[Alysia]

Hi. blood tests can be ok and you will still have wg and flaring. my wg doc just confirmed this to me. he said that labs are only tiny part of diagnosis. all your symptoms show that its wg flaring. I am sorry. you need to find a wg expert. please write where you live so that friends can give you names of decent wg experts.
how I hate those docs who think that they know but they dont.... yes. unfortunately you will have to fight to get a decent treatment. rituximab if possible. you have our back. you are not alone in this fight.

[Aylasnan]

Thank you Alysia I'm in Sudbury Suffolk.

[Birdie]

Have you ever heard of anyone with my symptoms having negative results?

Yes, many many times just on this forum, it's true of most new people posting here. Most all of us had a fight on our hands to get diagnosed. Difficult diagnosis and difficulty finding a doctor who know's Wegener's... are the only things everyone seems to have in common.

The best advice is to fight fast and fight hard for a correct diagnosis, whatever it is. And hope it's something less serious, even tho Wegener's is quite survivable you still don't want it.

Don't hesitate to ask a lot of questions. You'll get a lot of answers.