My specimen has been tested for TB. But, the initial result shows negative. They are still continuing to culture my specimen because it takes months before some bacteria to grow.

I feel relieved that Sarcoidosis is diffuse. I think mine is not scattered, its confined in one single area.

As for a test for restriction or air trapping: That's why I asked. I didn't know if it was based upon a special test he did or if it was just a conclusion he drew.

As far as I know, ILD is somethings that can be seen definitively on CT or biopsy. It is also the most common (and serious) lung complication of Sjogren's. Since your CT and biopsy did not show it (and it would have if you had it), I'm thinking you don't have this complication...which of course I was thankful for.

You dont realize how grateful I am to all your replies.

Yesterday, I had my visit with the rheumatologist. It was a very frustrating visit that I cried after the doctor left the room. (I hate it when I lost grip of myself.) My emotions have been building up for several months now for getting no definite answers from my doctors.

My pulmo is basically passing me on to the rheumatologist for finding nothing from the inflammation and scarring in my (right) lung. He said that the specimen has been tested for all kinds of stuff that is possible to cause an infection in the lungs but I am negative except for a little Klebsiella. He assured me that this kind of bacteria is not causing my lung any harm but just to make sure I am on Augmentin for 10 days. He said that he has a suspicion that it could be an autoimmune related. When I called in later to ask if there can be any alternative other than Symbicort, his PA said the other 2 available medicines are teh same as Symbicort. If Symbicort does not work, the other 2 will not possibly work as well.

When I mentioned this to the rheumatologist, she said: "Your pulmo keeps on saying it could be autoimmune, but I dont see anything on your results that says you have autoimmune. Dont label yourself with Sjorgren''s unless it shows".

I am fully aware about the difficulty of diagnosing autoimmune diseases, but my frustration is more like a feeling of 'I am boxed against the wall'. The doctors could not see anything. It would have been easier if the bloodworks show something. The on-going pain of neuropathy, the shortness of breath and stomach problems, well, fill my day.

I think it was based on the PFT.

Oh God, thank you so much for saying that ILD will show on the CT.

Did you inquire/discuss the lip biopsy? Does he think Sjogren's is even a possibility where the lip biopsy would be warranted?

I'm sure this is frustrating and feeling SOB and having other symptoms make the frustration even more profound.

If you're not happy with this rheumy, I would encourage you to set up the appt with another...even if it means waiting 2-3 months. Do it now. You can always cancel it down the road if you feel better, get answers from another doctor, etc.

Yes she requested for a lop biopsy. I'm waiting for the authorization, then schedule. I alspo requested for another referral to a rheumatologist.

What do u take for ur PN? Do u take gabapentin? I am now on 1200 Mg per day but it seems my symptoms have gone to another level. I'm trying to stay on it for as long as I can because am concerned of reaching the Max dosage too soon.

i agree with enbloc about a second rheumy opinion and i would also recommend that you get a second pulmonary opinion. you cant just continue on with shortness of breath and no treatment.

write down your questions ahead of time and bring them to your doctors appointments.

Do u think that infiltration will show even with moderate dry mouth? Sometimes I have saliva and sometimes there is dryness but not as bad as others would describe it.

I was referred to an ENT for the biopsy.

Yes, infiltration should show even in minimal dry mouth. However, the grading (and subsequent diagnosis) is based upon how much infiltration per 4mm sq area.

I don't take Gabapentin. I tried more then once but got no reduction even on high doses. Right now, I take a small amount of percocet, which only takes the edge off. I have also tried Lyrica and Cymbalta, but side effects were too much.

This is already my 2nd pulmo doc.