Does he really think the nodule is causing the SOB? It doesn't sound like it's large enough to do so...to the level of your SOB.

If it was autoimmune related interstitial lung disease they would have been able to tell from CT scan and/or biopsy so good news it's not that.

I'm not sure why he says it's not treatable if he doesn't know what it is...and he has only tried one thing so far (Symbicort). What's his plan?

I hope your rheumy visit provides more answers. I would really encourage you to get the lip biopsy if the rheumy thinks it may be a possibility.

It sounds that encapsulation is good because it limits the growth, is it?

The procedure didn't hurt at all, but well I was asleep. I only had a little throat soreness after the anaesthesia wore down. I was warned that there might be some blood but thank. God there was none. There was no activity or food restriction. The procedure will show abnormalities in the airways and lung arteries.

But, just like any other invasive procedure bronchoscopy poses some major risks.

He explained to me that I have that I have air trapping in my lungs.

I don't know how come he wasn't able to determine based on the cat scan or biopsy if autoimmune mediated.

He said that since my airways are clear inhalers will not do me any good. I read from the intrrnedt that restrictive lung disease does notrespond with inhalers.

I hope so too that rheumy will (should) help me with my condition. I keep my options open with regards to lip biopsy.

Does the level of SOB is commensurate to the size of the nodules?

how many nodules do you have? a few nodules should not make you short of breath.

it could be ok the encapsulation or it could continue to grow. that is why they are monitored for a few years to see where it is going.

I don't think one or two nodules would cause that much SOB. I imagine he would have told you if the nodules were that large or numerous to be causing the SOB. Did he say what is causing 'restriction'?

What test did he determine air is trapped or that there is restriction? Is he considering O2 at this point? If inhalers won't help, then what's his plan? You NEED some relief!! I can't imagine feeling SOB all the time. Is it still improved when you lay down?

The most common Sjogren's complication involving lungs is interstitial lung disease...which can be seen on CT or biopsy so you must be clear of that...thankfully!!

I failed to ask that question. I know I should have asked that question but I forgot.

Based on your experience, how large should be the area or how many nodules enough to cause SOB?

i dont know the answer to that question as to how many nodules or the area involved before a person would be expected to experience shortness of breath. a few no, many yes, how many exactly has never been explained to me. shortness of breath could also relate to the cause of the nodules.

i have read that a concentration of nodules in an area is usually related to infection such as TB. sarcoidosis would be diffuse and not confined to a single area.

I don't know the day, but know sometime this week you see the rheumy. Please let us know how that goes.

Is the pulmo planning on supplementing with O2 to give you some relief? If not, what is his plan?

He did not mention if my nodules were large enough (and I didnt not ask - duh).
He said that my number in the PFT for the Airway Resistance is 255 (and showed me the report - which of course I dont understand the numbers). He said something about the exchange of oxygen in my lungs....

No, he did not mention anything about O2. It was like saying the burden of knowing about what is causing the activities in my body falls on the rheumatologist.

Is there a special test to know if there is air trapping or ristriction, other than the PFT?

I will call the clinic if they have any other alternative inhaler for me. When I asked if I should continue the inhaler, he said that Symbicort is a strong stuff that it should benefit me. Symbicort does not improve my breathing nor the emergeny inhaler Albuterol.

en bloc, I am sorry, but I am confused with this statement:
The most common Sjogren's complication involving lungs is interstitial lung disease...which can be seen on CT or biopsy so you must be clear of that...thankfully!!"
Did you mean that if its Sjorgren's complication, it will show in my CT or biopsy as ILD?

Tomorrow is my rheumy appointment. I will continue to see this rheumy until I get the approval from my insurance for a second rheumy. I was told though that this 2nd rheumy that I am referred to will take about 3 months to set up an appointment for a new patient.

No, the pulmo did not mention about oxygen. He believes that my lungs is still considered within normal level. But, he acknowledges that the function has steadily declined since 2008. The frustrating part is he could not see in my tests the cause of hte decline.

I am so concerned about the decline of my PFT. I dont know why my body does not show anything for the doctors to properly address.