Lung involvement symmetrical?

[chrisTIn@]

Can Wegs lung-involvement or -damage manifest itself in just one lung?

I have pain in one shoulder and some trouble breathing, with pain on the left side of my lungs.
My GP ordered an X-ray, which shows 'something' in de left top of the lung or (left-)shoulder.
Can also be arthrosis, says GP.
Next week I will have a CT-scan. :unsure:

[Dirty Don]

Can Wegs lung-involvement or -damage manifest itself in just one lung?

Yes, it can. My initial X-rays showed massive involvement, but the resultant damage was 3% in the lower right lobe...I'm sure it varies. Best of luck.

[chrisTIn@]

Thanks for your answer.
It puzzles me. My initial x-ray in 2010 showed no lung-involvement, but maybe at that point there was already.
I read (don't remember were) that 40 % of Wegs-patients with 'clean' x-ray showed lung-involvement when CT-scan was made.

My bloodwork was good, when I visited vasculitis-clinic las time (february), and I am in a non-medicated remission.
Only that shoulder pain!!!! (Months and months of physiotherapy helped initially).
The question is now: Wegs involvement or something else?

[drz]

Non-medicated:hug3: remission is simply great!!!:hug3:

[annekat]

Chris, I'm another one of the 40% with a "clean" xray, although the doc on second glance saw something slight and ordered a CT scan, which showed the numerous cavitary lesions that suggested WG. Scary, but not as bad as some people's lung involvement, and no active disease there now. Congrats on the non-medicated remission! And I hope this shoulder/upper lung issue of yours turns out to be something else and something treatable.

[Psyborg]

I have completely clear lungs...my issue is in the left main Bronch. So yes to the asymetry :) And it definitely makes for breathing issues, so if the xrays are clear you might want to inquire about a brochoscopy to ensure it's not in the bronchial area. X-Rays seem to be completely unable to see anything, I went a long time before the figured out where my damage was that was causing breathing issues because I didn't show the classic broken glass thing on xrays.

[Alysia]

Hi,
it can be assymetrical.
can it be joint pain ?
when my lungs were inflamed, I had strange phenomenon: my palms where red, kind of wide spot in each palm according to the inflamation: in the side that was more inflamed there was wider red spot on that side's palm. as the inflamation lessened, the spots lessened correspondingly.
I hope you will soon find what it is and feel better ! :hug2:

[chrisTIn@]

This morning I got a phonecall from the hospital. They can have me for a CT-scan tomorrow already!
Thought I would have to wait 4 'office-days' for the creatinine-levels that they checked yesterday, but the results were already in, and within normal range.

Bob, can bronchial involvement not be shown on CT-scan then?


...you might want to inquire about a brochoscopy to ensure it's not in the bronchial area

[Psyborg]

Mine didn't show up until the noticed it on the bronchoscopy...but I'm not sure if my involvement is in any way normal. Mine destroyed the cartilage around the Bronch so it is no longer rigid. But it is hard to see without being inside and seeing what its doing.

[chrisTIn@]

Thanks for answering. I hope whatever there's inside my lungs or bronchs (is this the right word?) shows up with the CT-scan, that has 200 times as much radiation as a normal X-ray.
I was told a bronchoscopy is quite a painfull experience. Some people called it 'a near death experience'. Did you feel the same?

[annekat]

X-Rays seem to be completely unable to see anything, I went a long time before the figured out where my damage was that was causing breathing issues because I didn't show the classic broken glass thing on xrays. Yeah, I wonder why my doc even bothers with xrays at all anymore... I guess just to see if there's a visible change from the last one..... I don't get them often, though. So much showed on the CT scan that didn't show on the xray, it DOES make them seem sort of useless. But then, we don't want to get CT scans too often, either...

[chrisTIn@]

...we don't want to get CT scans too often, either...

No. See last page ;-)
CT-scan has 200 times as much radiation as 'normal' X-ray.

Remains the question about bronchoscopy.
Is this really such a painfull medical examination?

[Alysia]

I did bronchoscopy once, in the acute state and before dx. I was under sedation and felt nothing. I went to sleep and waked up when it was over. I felt nothing after it.
It is important who is doing it. my doc then was very reliable and professional and human. a friend asked me about it and said: "but it was an experience of totally loosing control", and I told her that the doc was so nice that I didnt mind loosing control with him :)

[chrisTIn@]

Well, thanks a lot for all the info and support so far. :smile1:

I searched for 'bronchoscopy' and found 105 results.
http://www.wegeners-granulomatosis.com/forum/search.php?searchid=387152

So I 'm reading.....

[annekat]

No. See last page ;-)
CT-scan has 200 times as much radiation as 'normal' X-ray.

Remains the question about bronchoscopy.
Is this really such a painfull medical examination? Yep, I'm sure that's why my doc doesn't order them for me except the one time that was necessary..... I wish I could answer your questions about bronchoscopy, but have never had one! I know that Phil has, in addition to Alysia and others on here.... glad you found some info in the archives and glad to hear that Alysia's experience wasn't bad at all!

[Psyborg]

I found the Bronchoscopy was not bad...but I was "Twilighted" and don't remember a thing. Actually that twilight thing is actually more disturbing to me that the procedure...the idea of being awake but having amnesia for a time period messes with my head. Easier to think of it as being asleep I suppose :)

[Pete]

I was "twilighted" as well for my bronchoscopy (and colonoscopy a few years earlier). My wife said I was answering questions during the procedure, but I don't remember a thing. Considering some of the alternatives, twilighting is a good thing.

[HopeinTN]

Are you coughing or weezing? Shortness fo breath? It could be an infection, Pneumonia. Try and not get too worried and keep us posted. I only have lung involvement and started out in just 1 lung but quickly went to both.

[marylz]

I had 2 bronchoscoppies(SP?) within 2 weeks of each other at 2 different hospitals when I was first diagnosed in Jan/Feb. Both were "twighlighted" but the first doc put lots of numbing stuff in first and I guess waited til I was fully numb. The second doctor was more impatient and it hurt a bit more, but it wasn't horrible. I did have lots of coughing after both though. Good luck!

[chrisTIn@]

Are you coughing or weezing? Shortness fo breath? It could be an infection, Pneumonia. Try and not get too worried and keep us posted. I only have lung involvement and started out in just 1 lung but quickly went to both.

Not coughing, very slight wheezing, but short of breath yes.
I also have 'chills' from time to time, not much, but still...
I was thinking of maybe some forgotten infection too, in some hidden part of long-top of bronchy.
Ofcourse, it can also be a tumour :scared:. My GP wants to exclude that.

Well, since I cannot seem to look inside, I just have to wait for the judgment and opinion of the radiologist and other specialists...

[mishb]

I sure hope it's not a tumour Christine.
I also hope that it's not wegs.

I hope it is just a little blip on the radar and wont be there when they look at the scan.

Take care

[chrisTIn@]

Thanks Michelle.
I had the scan today, and it wasn't so bad. Only the liquid-contrast-infusion felt a bit awkward.
Coming days we have a little holiday, I believe it's called Whitsunday, so on tuesday or wednesday I will probably have the results.

The support of this forum means a lot to me.
It helped me to ask the right questions, and to insist on further investigations when the cause of pain is not found,
or signs of disease are not taken serious by my local caretakers.
You're all great. I hope we all have a good weekend, with no worries.

I'm seeing my close family on sunday. We all live in different parts of the country.
We'll have some fun together and a good meal.
Hubby and I are looking forward to it. :smile1:

[Alysia]

Im sending you my love and my praying for good results & for feeling better asap.
have a nice weekend, and please update us.
:hug3:

[drz]

I found the Bronchoscopy was not bad...but I was "Twilighted" and don't remember a thing. Actually that twilight thing is actually more disturbing to me that the procedure...the idea of being awake but having amnesia for a time period messes with my head. Easier to think of it as being asleep I suppose :)

I don't remember my gastroscopes which were probably done with the "date rape type drugs" which I guess is same as being twilighted. I do remember when they went exploring in my lungs and was intrigued with the guided tour of my lungs as I watched it on the monitor screen while they commented on what the camera was showing. I know they have always used some drugs to relax and numb the areas being explored which must be effective since I don't recall any significant discomfort from the procedures. Like many things the amount of discomfort one will experience will depend upon skill of person doing the procedure and the tolerance for the procedure of the person being scoped. I think the scopes are very useful but sometimes the heavy radiation CT scans are also necessary to monitor what is going on.

[chrisTIn@]

I hope it is just a little blip on the radar...



Well, I'm happy to say they found no Wegs involvement in my lung(s).
No other scary things either.
Phew! I'm so relieved! :thumbsup:


Apparently is't my first rib that causes so much pain.
They saw a 'strong calcification' of the 'costosternal first rib attachment on the left side'.
I had a conversation with my physiotherapist, and he told me that I must be patient.
No exercise with my arms and shoulders, but I can do cardio-training and go for a swim.
Pffff. I'm so happy that this isn't directly related to Wegs!
Sometimes it's hard to tell, because I do have jointpains that are 'Wegs-related'.

Thank you all again for all the support and encouragement!

[Alysia]

Well, I'm happy to say they found no Wegs involvement in my lung(s).
No other scary things either.
Phew! I'm so relieved! :thumbsup:


wonderfull news. big relief ! :hug3:

[mishb]

That's the best news I have heard today :thumbsup: