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Gwenllian
02-28-2009, 11:05 PM
Hi
Sorry I haven't posted for ages, been really busy.

As far as I know, for the past few months i've been ANCA negative, but i've been getting so breathless with a dry cough which makes me gasp for breath.

I went to hospital last week, and my CRP and ESR were around 100, but as my oxygen levels were ok, they put it down to a virus. :rolleyes:

I'm still feeling really weak, tired, and breathless. I wondered if I had asthma or something, but I don't have a wheeze, and when I try ventolin it seems to irritate my lungs and i have coughing fits.

I give up going to the GP, and rheumatology aren't seeing me until next week.

I wish I could take my own bloods, and look at the resuts myself. I don't trust anyone else!!!

;)

Jack
03-01-2009, 02:53 AM
After a few months of problems, I think you should be asking for a referral to a lung specialist.
After many years in remission, I developed a cough which turned out to be Bronchiectasis. Oh joy! I went through quite a few different inhalers before finding a couple that had any effect at all. It is now one of my more serious problems and I wish I had been able to catch it earlier.

Gwenllian
03-01-2009, 03:14 AM
Thank you for your reply. Whenever I see a doctor, the listen to my lungs and tell me it sounds clear...but why do I struggle so much then? My tracheal stenosis is fine at the moment, so i know it's not that.

Will keep you updated...thanks :)

crackers
03-01-2009, 11:41 AM
hi gwenllian.
in september of last year i had surgery,not wg related.before that i was feeling pretty good wg wise.since the op i have experienced the same symptoms as yourself.as with you lungs are clear CRP, was 30 which is up a little but not much.my rheumy has referred me to cardio and respiritary for further investigation.will keep you posted.
john

Sangye
03-01-2009, 03:59 PM
Gwenllian, when my lungs were full of hemorrhaging blood, and even when they were full of blood clots, they always sounded clear. I couldn't breathe and my docs then told me (of course!!) I was crazy. Also, my oxygen levels always measured fine, but I was clearly cyanotic. Each time it persisted, they'd finally order a chest CT and discover what was really wrong.

When's the last time you had a chest CT? Your inflammatory markers are high--that's not a virus. The ANCA is not necessarily a reliable predictor. You could be flaring. I hope you see your rheumy quickly this week.

Jack
03-01-2009, 07:15 PM
I'll just add my name to the clear sounding lungs list! ;)

I have a lung infection at the moment (coughing up lots of green stuff! Yuk!), but my lungs sounded clear when I went to my GP for a different antibiotic. Luckily, he always believes what I tell him. :)

Gwenllian
03-02-2009, 06:20 AM
thank you so much for your replies, you make me feel as though i'm not going crazy! I feel like such a hypochondriac sometimes :(

I haven't had a chest CT for years. During my first ever flare up of WG, I had a terrible dry cough and I just couldn't breathe. Eventually, my lungs started bleeding / collapsing, and I was intubated in intensive care in weeks while the doctors tried to get me back into remission.

I have had a lot of chest x rays over the years, but not recently, especially now that i'm pregnant. That' the other thing, doctors know i'm pregnant and put it down to that - which is a possibility i know, but im only a few months, and i've been complaining of breathlessness even before getting pregnant. :confused:

Anyway, sorry for the rant, but thank you so much for your replies. I'm glad that a clear chest doesn't neccesarily rule out any problem.

I am seeing Rheum next Friday, hoping to get some answers/reassurance then.

PS. good luck John, hope things work out ok for you.

coffeelover
03-02-2009, 12:25 PM
If you were intubated you could have tracheal stenosis. The sooner you you have a PCT test the better and the sooner you see your Rhuemy the better. Good luck! I'll be thinking about you as I know exactly what it is like to not be able to breathe. Thank goodness! I had doctors that jumped on helping me right away ( I was the procrastinator in getting thehelp to begin with....but never again)

Gwenllian
03-02-2009, 06:04 PM
Hi
I do have a tracheal stenosis, it was mis diagnosed as asthma for over 7 years! I asked my consultant (at that time), if I could have TS, and he told me categorically no, and thought I was a complete hypochondriac!! By the time I became pregnant in 2004, I had a 70% blockage in my trachea and had to have emergency surgery. :rolleyes:

My TS is actually a lot better at the moment, it's definately a lung thing (as far as I can tell), but i'm seeing ENT this week for a check up anyway x

coffeelover
03-03-2009, 09:02 AM
OMG! 7 years of misdiagnosis! I am so sorry. Best of luck with your breathing situation now. I am thinking about you
Lisa Coffeelover

Gwenllian
03-03-2009, 09:12 AM
I made the difficult decision to take legal action against the NHS, I was so devastated. I found out a few weeks ago that I won my case, really pleased, and hope that this will make mis diagnosis of this type less likely in the future x

andrew
03-03-2009, 09:31 PM
WOOOOOO!!!! Congratulations on the win, you deserved it. Like you, I hope it prevents others from going through the same thing.

Carol
03-05-2009, 02:16 PM
My friend has WG and every 12 months she goes into hospital to have her lungs done - from waht she tells me they stretch her airways to open up the scar tissue that developed. I'm not real sure of the procedure but that is how she explains it. Hope this helps.

Sangye
03-05-2009, 02:46 PM
Ooh. Sounds like having a face lift from the inside out. :D