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.

[Aylasnan]

Thank you Birdie. Forgot to mention numerous small lumps under skin which cant be seen just felt and a large lump you can see lower leg which is being scanned next week.

[Birdie]

Thank you Birdie. Forgot to mention numerous small lumps under skin which cant be seen just felt and a large lump you can see lower leg which is being scanned next week.

More possible Wegener's, common symptoms, sorry to say...

Lumps like that are a good candidate for tissue biopsy, and a low risk of complications from the biopsy. Keep thinking... speed, hurry up, no I can't wait six weeks for an appointment so I'm going to look for a different provider. OK, I know... broken record... repeats itself constantly...

[Aylasnan]

Yes I wondered about that. Not sure what a scan can show? I have also had a butterfly rash for years but don't know if that can happen with Wegeners? Thank you very much for your time :)

[Birdie]

I have also had a butterfly rash for years but don't know if that can happen with Wegeners?

Wegener's patients get all sorts of skin issues, including rash, lumps, bruises, sensitivity, etc...

Let us know if your hair turns pink, that would be a new one, and post pictures too. :)

Yes, the broken record is also a wise a*#... but ya gotta have humour someplace so take the issues seriously while laughing.

[annekat]

Yes, it's possible to have tests be negative and still have Wegeners. You could ask for a biopsy of your sinus/nasal tissue, since they already tried it with the lung nodules. It is a easier and less invasive procedure, though the results are considered less reliable in the sense that false negatives are possible. But if your sinus and nasal area is particularly inflamed, they might be able to get a sample that would contain granulomatous material, if you have it in there. I understand your current docs are resistant to the idea that you could have WG, and wonder if there is any provision within the health care system for second opinions. And it's a shame they won't refer you to a rheumatologist.

[Aylasnan]

Ha ha brilliant! I bruise very easily..

[Aylasnan]

Thank you Anne :) I may just refer myself privately :)

[debra]

Aylasnan, hi. Think I just posted on you're other question? Ya, think its you. Aylasnan, you're butterfly rash is sounding more like lupus, to me. Did you're doc do an Ana? Maybe you can suggest this as well? A lot of you're symptoms sound more like lupus, but I'm no doctor, so... Are you more Sun sensitive lately as well? Also the nodules and lumps can also be lupus, as can sinus stuff.... Anyway, something to think about, in terms of not Wg? Good luck, nevertheless...... Debra.

[debra]

Oh, and the other question on blood work, would be yes. Blood labs can lie, in my case... I feel like death took a holiday, but my labs say I'm vacationing in, yes bora, bora... I'm not. But I also have a rare blood disorder that can mess with some tests. Also the rarest blood type in the world, so yes I could have hit that lottery. When in the most pain, my crp is lowest, when least amount of pain its highest. Sed rate, plays tricks as well, although this could be the lab, as its a high sensitive test, that has to be done specifically perfect. Did that make sense? Well it does to me..... Blood looks like it will show, when its to late in my case. Yet the things that do show, and there's a lot, just aren't taking seriously. They would be, if I made a lot of money, and had better insurance though. Mark my words on that..... So now I feel I should invite you to dinner, as I feel like I know you now...... Debra.

[drz]

Thank you Anne :) I may just refer myself privately :)

What does the find a zebra website suggest for a diagnosis?

Have you considered going to Mayo? They seem to enjoy challenging cases?

[Aylasnan]

Thank you Debra and drz :) I am in the UK :) The Ana test was negative. All allergy tests negative. Only things found were raised creatine serum and inflammatory markers.

[debra]

Alyasnan, hi. Hopefully she/ he, will keep checking periodically because antibodies don't always show the first time, or second or third, ect. Its complicated more so for some it seems, huh? At least the doc, is trying, so that's pretty cool... Are they watching you're creatine? I have to go and re read, as i am a little tired. Hopefully you'll get answers soon. Again, at least the doctor seems to listen and run the tests? Good luck, Debra.

[MikeG-2012]

Have you ever heard of anyone with my symptoms having negative results?
My ANCA has been negative for the past three years post-diagnosis. I had chronic bleeding and sinus infections for about 5 year prior to diagnosis. Nasal biopsy showed nothing either.

Was your lung biopsy a needle, or was it surgical to remove a large sample? A needle biopsy might not be good enough. Mine wasn't. they took a piece of my left lung the size of a can of Altoids back in 2012, and that definitively said wegs.

I would find a vasculitis center near you and go there yourself. YOU are your only advocate right now, so it is up to you to be pushy and go help yourself.

If you had a hair stylist who kept cutting your hair the wrong way, wouldn't you immediately find another one? Why not the doctors then?

[Aylasnan]

Thank you Mike. It was a needle one and very painful as I was coughing up blood and couldn't keep still!

[Birdie]

If you had a hair stylist who kept cutting your hair the wrong way, wouldn't you immediately find another one? Why not the doctors then?

That's a great way of making the point.

Nobody ever goes back for a second bad haircut.

A tenth bad doctors appointment seems to be a common occurence.

[debra]

You wanna bet? Deb.

[Alysia]

If you are in the UK then you have the best wg expert, professor Jayne at addenbrouxes hospital. My wg doc is consulting with him from Israel. He is Geoff's doc so you can try to send pm to Geoff here.

[Aylasnan]

Thank you. Optician has told me today I have sclerisis sorry not sure how spelt, inflammation of eye white which is associated with Wegenners so maybe at at I'll get a referral to David Jayne.

[Birdie]

Thank you. Optician has told me today I have sclerisis sorry not sure how spelt, inflammation of eye white which is associated with Wegenners so maybe at at I'll get a referral to David Jayne.

The issue is no good but maybe it will get you diagnosed. :)

Birdie...
always trying to find the good in bad things

[debra]

Aylasnan, man why is that a tuff name for me? I have this eye thing, scleritis, and you would think that would be a dead give away, since I'm told only wegeners causes it, but nope. No... Maybe you will have better luck here. Actually anyone would... Good luck,it Realy sucks, very painful! Felt like a knife in my eye, until the doctor, eye, dilated me, then the pain was gone. He actually gave me the dilation drops... Be sure you're careful as you can lose you're eyes with this... Birdie, hello... Oh good, the o is there! Breath of fresh air..... Debra.

[Aylasnan]

I am Aylas Nan lol, thought that may help :) Mad that I'm feeling happy to have this eye condition so they might blloming listen grrr had chronic rhinitis and conjunctivitis for years!!

[Birdie]

so they might blloming listen

Did anyone suggest geting "BITCHY"? OK, maybe just actively involved, persistent, forcefull, or just plain loud and BITCHY! Whatever it takes. Awww crap, broken record again...

So where does your name originate? Never heard anything like it before.

[debra]

Hi, so now I Realy don't know what to call you! Ok. Pretty name. This is not a real pleasant eye disease, but itshould push a diagnosis for you. My eye doctor looked horrified after the dilation, I swear he turned white. Then he said this is autoimmune you need to see you're doctor, ect.. Are you in pain? Eyes, I mean? Deb.

[debra]

Birdie, you flirt! And using the cuteness of you're birds too! Imagine how they will feel knowing you're whoring them out? Me!

[Aylasnan]

My name is Sharon. My Granddaughters name is Ayla. So I'm Aylas-nan :)

[Aylasnan]

Yeah usually just sticky red itchy etc but went to optician today because of pain :)

[debra]

Oh, ok. Cool.. its pretty though. Just hard when replying, as I had to keep going back to look... Sharon, nice to meet you! Deb.

[debra]

Well hopefully they got it in time, before the ice pick stage! It was horrible! Are you on the pred forte drops? Deb.

[Aylasnan]

Got Hydro forte drops nice to meet you too Deb :) :)

[debra]

Sharon, were the drops over a hundred dollars for a fourteen day supply? Not covered by insurance of coarse? As if the pain in the eye wasn't enough, this caused a new pain, in my a**!!! Which then went on to spread... Ya, let's hope its something else... Deb.

[annekat]

I'm sorry for you all with the scleritis; I had definite eye issues cropping up right around time of dx and nobody paid a lot of attention, they were too busy worrying about my lungs, saddle nose, etc., but as soon as I got proper treatment with CTX and prednisone, the eye issues cleared up, completely! I'm thankful for that. I wish the same for you.

[debra]

Anne, hello, again. notice how that o, is firmly in place... Anne, this Wg thing, when you Realy think about it, just completely sucks! I mean nothing is off limits.... Cervical cancer, was a walk on the beach next to this, and yes in bora, bora. And I had a pretty bad case. Category or stage 3? Can't remember how its rated with the cervix... This topic, was discussed as I'm sure you remember, years back. Please don't hate me for being honest here, but if I could choose, ya I'd pick for myself anyway, cancer. At least doctors know it, can treat it, or not, people understand it, can be isolated or not... But wegeners seems to effect everything. Again please don't hate me,for sharing the truth of what I would pick, regardless of the outcome.. my dad has lung cancer, diagnosed in May, 2011 had surgery and thank God, has been good... Debra, just stating my personal opinion...

[debra]

Should have been more clear here, as i know some will be pissed with this. For my particular case, this wouldn't even need a three second thought. You all here, well not all, but a vast majority have gotton a diagnosis, ect. Im coming up to four years May, with every symptom... Five years in all, since the tiredness weight loss ect. I've just never seen anything like this. Ask what isn't effected and I couldn't even tell you? Again, just my personal honest choice. At least give me something for honesty? Deb.

[annekat]

Anne, hello, again. notice how that o, is firmly in place... Anne, this Wg thing, when you Realy think about it, just completely sucks! I mean nothing is off limits.... Cervical cancer, was a walk on the beach next to this, and yes in bora, bora. And I had a pretty bad case. Category or stage 3? Can't remember how its rated with the cervix... This topic, was discussed as I'm sure you remember, years back. Please don't hate me for being honest here, but if I could choose, ya I'd pick for myself anyway, cancer. At least doctors know it, can treat it, or not, people understand it, can be isolated or not... But wegeners seems to effect everything. Again please don't hate me,for sharing the truth of what I would pick, regardless of the outcome.. my dad has lung cancer, diagnosed in May, 2011 had surgery and thank God, has been good... Debra, just stating my personal opinion... No reason to hate you for your point of view! For me, Wegeners hasn't affected even close to everything, but it still could! Having gotten treatment has made all the difference but is still no guarantee! At this point, given my experience, I'll take the WG over the cancer, since I wouldn't know in advance what type or how fast growing it would be. My friend's 34 year old son just died Dec. 22 of a very fast growing cancer that apparently started in his brain and lungs and quickly metastasized throughout his body. He hadn't a clue that anything was wrong until a week before he died. Another friend, age 58 at the time, had been complaining of back pains but otherwise felt OK, then suddenly collapsed and went to hospital, everything shut down and she died, turned out she had extensive bone cancer that had spread to her organs. I know it doesn't usually happen this way, people usually find out early enough to get treated..... so, again, you have every right to your preference based on your experience. XXOO

[Aylasnan]

I understand Deb as when the lung nodules were found I suspected Wegeners or cancer. Was told cryptic organizing pnuemonia... here I am 6 months later convinced I have Wegeners just waiting for the NHS to catch up!! During that time, awful as it sounds, I've found myself thinking I don;t know how much more of this I can take and had it been cancer I would of hopefully been through treatment and on the way to recovery now. You've actually been there. Don't feel bad xx

[annekat]

No problem, Deb, no one should be pissed for your expressing your point of view, every case is different, and neither cancer nor WG is anything anyone wants to get! There isn't a lot of point in saying which is better or worse, except when looking at individual cases.

[debra]

Thanks you guys. I just feel like honesty always pays. I'm not a good liar. My dad with his lung cancer, and watching close because it can go to the brain. My aunt and her daughter, my cousin going through hell, both with breast cancer, and on and on. Yes is still pick it. All diagnosed... This is by far the most frustrating sickness in the world. Im not joking when I say I can't think of any area, I'm not having issues with! Even my breasts, don't feel right! My left side has the Wg burning pain. It's just crazy. I'm at the point now, where I'm not even sure I want to know what's going on, inside? Ya know? It seems to be taken everything. When I get up, after actually sleeping, I check to see, is my nose still there? Amazing... Even my finger nails are weird! Deb.

[renidrag]

Hello Alyasnan, my diagnosis came from a bronchoscopy so I hope that would be "good" news for you. On the other hand I was diagnosed in 09 and in remission in 10. It does not work that way for most people. I hope you can get to Addenbrooks, Geoff goes there and I know of others who go/went there. Keep digging and try to have someone else at your appointments to listen to what is being said, four ears are better than two. Now get on the phone.
Dale

[Birdie]

During that time, awful as it sounds, I've found myself thinking I don;t know how much more of this I can take

Try my solution when when you feel way, come here and give Deb a hard time about something. Matters not what it is, just beat her over the head about something silly. Why wait, do it now, but do it with a smile. :)

[debra]

Dale, hi. I know you're a private person, but wondered how today went with Dr. Monach? I hope good, and knowing you have him, should hopefully bring some comfort? Birdie, never change! Deb.

[debra]

Oh, Dale! You could have frightened Dr. Monach today, by telling him, there's a nut on my forum, trying to work her way to you! Be thankful for you're new patient policy, of no more new patients! Dale, what's going on? Dale, talk to me? Deb.

[drz]

Thank you. Optician has told me today I have sclerisis sorry not sure how spelt, inflammation of eye white which is associated with Wegenners so maybe at at I'll get a referral to David Jayne.

That was one of my first symptoms too.

[debra]

Hi, Drz... I didn't know this. Interesting.This was what led me to wegeners. A weird help for me, but unfortunately not Realy medically speaking, as it should have been.... Oh well... Deb.

[Aylasnan]

Thanks Dale :) Did the take biopsies at the bronchoscopy? Was that how you got the diagnosis?

[Aylasnan]

Well guys, I've been to my GP this morning and she has agreed to look into referring me to David Jayne at Addenbrookes after I told her about my eyes. She just wants to check my symptoms notes etc and will let me know by tomorrow morning :) Feeling hopeful..

[Birdie]

referring me to David Jayne at Addenbrookes

Did it help to get bitchy? :)

Keep it up... doctors are just people... they have a lot going on with a lot of patients... you are your best/only advocate...

Try this... my rheumatologist appointment today was cancelled late yesterday, not that it matters much since she has no clue about Wegener's. Been waiting four months for this appointment and now I'm told the next available appointment is late March. I'm still going to the VA hospital today, I'm expecting a sudden eruption of extreme bitchy'ness...

[MikeG-2012]

did it help to get bitchy? :)

try this... My rheumatologist appointment today was cancelled late yesterday, not that it matters much since she has no clue about wegener's. Been waiting four months for this appointment and now i'm told the next available appointment is late march. I'm still going to the va hospital today, i'm expecting a sudden eruption of extreme bitchy'ness...

go get 'em birdie!!! (-8

[Aylasnan]

Ha ha Birdie.. I shall be getting bitchy tomorrow if she refuses to refer me ;)

[debra]

Sharon, hi. Good for you... Good luck! Birdie, hello, there. Just trying to see if the O is still there? Good luck today! Mike, hi. Hope the leg is healed..... Deb.

[Aylasnan]

Birdie, I did it! Got bitchy! Well slightly haha.. GP rang and said seeing as pulmonologist is taking more biopsies next week during my tracheoscopy how do I feel about waiting to see if there's any sign of vasculitis and tking it from there? I said dissappointed is how I feel, and that I would like a referral to David Jayne now as it will takes weeks to see him and by then we will have biopsy results back either way. She agreed to refer me know after suggesting she asks his opinion first which I declined. Feeling triumphant :) :)

[Birdie]

Birdie, I did it! Got bitchy! Well slightly haha.. GP rang and said seeing as pulmonologist is taking more biopsies next week during my tracheoscopy how do I feel about waiting to see if there's any sign of vasculitis and tking it from there? I said dissappointed is how I feel, and that I would like a referral to David Jayne now as it will takes weeks to see him and by then we will have biopsy results back either way. She agreed to refer me know after suggesting she asks his opinion first which I declined. Feeling triumphant :) :)

Ass kicking might be the best therapy, at least emotionally.

And... by bitchy I meant exactly what you did.

HELL NO I DON'T FEEL COMFORTABLE WAITING!!!!!

In what universe would it be OK to wait?

GET THE BALL ROLLING NOW!!!

DO SOMETHING!!!

Sheeesh...

[Aylasnan]

Ha ha simple really... what would they want for themselves or their family... might say that next time ;) You were there on my shoulder pushing me this morning. Thank you :)

[Birdie]

You were there on my shoulder pushing me this morning. Thank you :)

A broken record can get stuck on the right message. :)

Maintain that attitude or I'll be back, there's lots of room on my volume knob so it might get even louder! :)

Gary
join the broken record choir, it's free and everyone is welcome

[debra]

Sharon, good for you... Birdie, jokes but he's a wise man, so listen to him. Wise in a lot of things, others, well....... Debra.

[Aylasnan]

My Mum has Acromegly - very rare and my Brother has Addisons disease. Nearly every one including me has Hypothyroidism. We are and odd bunch :)

[debra]

Sharon, hi. Just curious, is you're hypothyroidism autoimmune also? I ask because mine is, as well as my mom. There's regular hypo, but also autoimmune. Sharon if you're not sure, its a good idea to find out. My mother went her whole life not knowing this, she just wouldn't listen to her daughter. I nagged for years, and finally got her to ask her endo, to test antibodies. I then said, let me know how high they are. She ignored me. Later I asked and she said, 8,000 was her count for Tpo, antibodies. I have hashis, so does she. Most don't know hypo, more times than not, is autoimmune. If youre concerned,ask you're doctor to run a complete thyroid panel with antibodies. Tpo, trab would be for hashis. Also called hashimoto thyroiditis...Then there's graves, on the opposite end, though same disease for the most part... It never ends, Sharon... Debra.

[Aylasnan]

I had no idea Deb! Thank you. I take quite a high dose of levothyroxine - 250 mcg but no idea if it's autoimmune or not. If it were, would it help with Wegs diagnosis?

[debra]

Sharon, hi. No it wouldn't with wegeners, but would help to know its autoimmune, as opposed to garden variety hypo. If its hashis, you're thyroid is under attack. Also ultrasounds would be done to spot thyroid cancer, ect. Also, you're treatment could change. I would look into a combination pill like narurethyroid, or armour thyroid, because what you're taking, which I call, syncrap, sorry, but I hate it because you need t3 in you're system, and synthroid, that you're taking is t4 only, which means you have to convert it, and a healthy person has a hard time doing that, let alone when our bodies are fighting something. When sick, or not sometimes, we can't convert t4 into t3, if this happens, it adds to a lot of health issues. My grandfather, I believe wouldn't have died of a hear attack, had he had t3 in his system. The heart needs t3. So when sick, the body will preserve the t3 and turn it into reverse t3. So it holds it and stores it, and the body suffers. My endo told me there's nothing left, my thyroid, killed itself! I hope this explains a little, as there's a lot to the thyroid. You could also supplement what you take, with added cytomel, which is pure t3. Good luck, Sharon! Deb.

[Aylasnan]

Thank you Deb. My GPs going to love me ha ha..

Had x ray on my calf lump this morning and the radiologist said it looks like a lipoma. A bit worried about my blood pressure as its 160 over 95 and I'm already on medication for it..

[debra]

Sharon, I was laughing thinking of this, just tell her a friend told you! Never mention internet, to some doctors... I was reading last night, what they call the lumps, under the skin, caused by Wg, and can't think of it. Sharon, how are youre kidneys? I need to go back and re read. But kidneys, and even dehydration can cause weird blood pressure numbers... Stress can as well, so... Deb.

[Aylasnan]

Fine as far as I know... but I do have raised creatine serum level

[debra]

Sharon, if you don't already, get you're labs... Copies I mean, probably knew this... Deb.

[Aylasnan]

Okay will try my GP. She's going to say that friend of yours is not friend of mine :w00t:

[debra]

Exactly, Sharon! Just say, whatever... Sharon, good luck, and I hope you keep posting, regardless... Deb.

[Birdie]

She's going to say that friend of yours is not friend of mine :w00t:

Leave me out of it, blame the bitchy'ness on Deb.

[debra]

Birdie, ha ha!!!!!! Oh what a twit!!! Yes you are. Can you dig it, Birdie??? Me!

[renidrag]

Aylasnan: Keep an strict eye on Creatinine, that is the measure of how well your Kidneys are. Get the results and look at them. As far as my diagnosis, I was diagnosed on the second Bronchoscopy. Before I even was aware what was going on, Dr. was in the waiting room giving my wife prescriptions and ordered her to get them into me that night. It does sound however your case could be very complex from what I have read.
Dale

[LisaD1]

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.

i have lungs with lots of nodules too - the cat scan report said "prior granulomotous (sp?) disease", and bronchiectasis (sp?) - tree in bud. I also have asthma There are over 20 granulomotous (sp?) diseases some infectious and some auto immune and some fungus. My pulmonary dr. keeps looking for bugs in sputum and coming up empty but still thinks the lung chaos is microorganisms. No bronchoscopy yet but he said he wouldn't diagnose wegs only look for bugs. My kidneys suffered rapid decline prior to any diagnosis as seen by that cretatine no. which we now check monthly for any change. I had zero symptoms just sudden kidney decline. The good news is that though the kidneys did not improve a huge amount, with some weg treatment they did improve out of the you need a transplant range. I have found that most organ type specialists do not deal mentally well with wegs - nephro or pulmo - but rhums do better. I am not positive C anca but am positive PR3. I suppose ultimately I will have to go to a top wegs pulmonary dr. but I get easily overwhelmed with too many appointments. Prednisone has helped my creatinine numbers so far. Don't know if this is helpful.

[LisaD1]

Aylasnan: Keep an strict eye on Creatinine, that is the measure of how well your Kidneys are. Get the results and look at them. As far as my diagnosis, I was diagnosed on the second Bronchoscopy. Before I even was aware what was going on, Dr. was in the waiting room giving my wife prescriptions and ordered her to get them into me that night. It does sound however your case could be very complex from what I have read.
Dale

was your bronc done for biopsy purposes based on what they saw on cat scan? why two? Thanks!

[debra]

Sharon, see even Dale swung by. Dale, hello there.. and Lisa, hi... Sharon ask for the copies of you're labs, as mentioned on previouse post. Start getting them all, you may spot something they do not... Doctors, make mistakes! Debra.

[LisaD1]

i also always get the reports and read them carefully because sometimes the reports suggest tests to be done to your regular dr. etc. or when you should do a repeat scan or something. These are sometimes missed - famous story is Congressman who had a scan at walter reed where something looked a little funny in pancreas -- walter reed reported to dr. to do follow up scan in 6 months - dr. did not - congressman got pancreatic cancer found way too late.

[Birdie]

Don't know if this is helpful.

I find it very helpful anytime someone puts in the effort to tell their story that well.

And... while it's true that many things cause granulomatous cells, Wegs cells are a very specific type. A good tissue sample can narrow it down to Wegs or one other possibility.

[Aylasnan]

How else would we be here? Docs are doing a job... no compulsion to look further..

[Aylasnan]

Managed to get copy of bloods done in August when I started coughing up blood. Only abnormal thing is

serum c reactive protein level 58mg/L <6

Does anyone know just how high this is please?

[debra]

Sharon, there are referance ranges on the labs. But with that said, youres cant be that much different than here. This is high enough. Did you're doctor express concern here? Frustrating isn't it Sharon? Deb.

[Birdie]

Managed to get copy of bloods done in August when I started coughing up blood. Only abnormal thing is

serum c reactive protein level 58mg/L <6

Does anyone know just how high this is please?

Different labs use different methods to perform the testing, so you need the reference/normal range from that lab. My last test for C Reactive protein was 15.8 mg/L with a reference/normal range of 0-3. I suspect that normal for yours is considered to be less than 6. If that's true then 58 appears to be quite high.

[Aylasnan]

Think our ranges are the same. They said it's just a mark of inflammation. No urgency expressed.

[Aylasnan]

Just got back from a rather uncomfortable tracheoscopy. They took lung biopsies and biopsy lavage so hopefully something will be revealed :)

[debra]

Sharon, hi. Wow, you must be feeling anxious. Were here Sharon. Please let everyone know, what's up? Doctor not being concerned with those numbers, disgusts me. I go through this on a constant level. Tell him next time, hey inflammation isn't normal! Some doctors, not saying youres are just incredible. Ears to hear but hear not. Eyes to see, but see not... Hang in there Sharon... Deb

[Birdie]

Think our ranges are the same. They said it's just a mark of inflammation. No urgency expressed.

You posted: "serum c reactive protein level 58mg/L <6".

"<6" means less than 6... as the result expected in the vast majority of people.

My test result has a normal range of less than 3 which is half of yours. If I double my test result to make it match the range of your test, then I get 46mg/L... not so much lower than yours, and it's very close to that every time since Wegener's, four years and still going.

This is one symptom... They are working on the cause... So smile big but get BITCHY whenever there is no progress. :) :) :)

[Aylasnan]

Thanks Guys :) Getting replies here really helps keep up morale :)

[annekat]

Thanks Guys :) Getting replies here really helps keep up morale :) That's what we're here for! I'd be saying more, but it's getting a bit out of my familiar territory. Best wishes that things will come together, questions will be answered, and progress toward recovery will be made. :smile1:

[debra]

Sharon, my friend, hang in there! It's a ride that just gets more crazy everyday, for some! And I'm in the some, Sharon... So, it helps knowing you've got company... Anne, nice seeing you're beautiful face... Debra...

[Tom]

Hi Aylasnan, I like to check in once in a while.
I saw this post and as I understand the thread and your question.
In January of 2010, I was struggling with my breathing. I went to my Dr and she sent me to a pulmo because I had been coughing up blood and my ability to walk was gone!
The Pulmo said I had COPD and began treatment and convinced me t o have a scope done to find the cause of the blood!
I reluctantly agreed but I could win against 2 women, my wife and my Dr.!
As it goes, I had the scope done and she found a growth on my right lung. She tried to biopsy it but it kept moving and oozing so she contacted the surgeon and I ended up having 2 lobes of my right lung removed and the growth was tested and de
determined to be a HEMATORA, I think it called. At first they thought my colon cancer had returned but the pathology report did not see any cancer. In April, I went into the hospital with Pneumonia symptoms and my legs had purpura all over them! It turned out that I had wegs and the growth on the lung was in fact Wegeners! But we did not know at that time and Wegs is so rare that it was not tested for because the insurance would not pay for speculative test as I call it! The purpura was the factor that allowed them to test for the Wegeners!
The problem with the random test for wegs is that you can have wegs and blood test will not provide proof positive and there fore treatment is not recommended! On the other hand, blood test can show positive results but that could include a number of possible causes!
One year earlier, I saw a Rheumatologist for swollen joints and pain because my RA factor numbers were elevated. He couldn't treat me until he actually saw the swelling and had blood work for that event. this was because he told me that since I had a history of cancer, and that he would treat RA with cancer drugs, I would have to be wary of a dangerous reaction as in I could die! You can only have so much cancer meds in a lifetime I guess!
After the wegs was found and I went to him for treatment because he left an open appointment in case I had another episode to come in right away!
He was relieved he didn't treat me on just one lab from the primary Dr because he says he would have killed, which led to If we don't treat I'm going to die! I have been thru the mill as many on here have also!
Stay after the Dr's and press them for an answer! My opinion is "If I can put a name on it I can help the Dr deal with it!"