Don't worry about active vs inactive. Whatever is causing your problems is an obvious active process. Therefore IF it is Sjogren's, your lip biopsy will show the appropriate amount of infiltrates. Like I said, you don't have to 'build up' a disease process. So your idea that your won't have enough "yet" is not going to be a problem.

Well noted. Thank you so much.

Hi echoes,
I read in one of your older posts, you are using CPAP. Was this prescribed to you because of your lung problem or for sleep problem? If for the lungs, does it help you? Do you use it often or just when necessary?

I remember you mentioned that you are taking other inhalers (on top of Symbicort), do the other inhalers help you?

I dont think that Symbicort is helping me much. I read that if one has a restrictive lung problem, inhalers are not much of a help. Though the doctor gave me an inhaler for emergency purposes, but he said that it will surprise him if I will benefit from it.

I have not yet been officially diagnosed of anything, pending the result of the biopsy this July 31.

Be well.

Please forgive me en bloc if my memory is not correct about my recollection of one of your posts, you mentioned that you have diaphragm problem?

How does diaphragm disfunction diagnosed?

Thank you.

i have an albuterol rescue inhaler
i take advair and spiriva everyday. i never took symbicort.
the cpap is for sleep.

I had breathing tests specific for this. I can't for the life of me think of the name, but it was like MMA & MMB or something like that. The detailed test involved pushing air out against resistance and likewise breathing in with resistance. I'm sure I'll remember after I post this reply...lol

...why did the test/s ever considered? What was your symptom/s that made your doctors thought of giving you these tests? I'm sure its not a routinary test for all patients with breathing problem.

I wish not to appear too strong to be suggesting tests to the doctors without knowing the symptoms. But at the same time I want to be pro active in my treatment. Sometimes doctors need also a "little help " from us patients..

Thank you.

The pulmonologist knew I had Sjogren's with neuro problems...including muscle weakness in other areas. There was also suspected myopathy/myositis, so he tested for the diaphragmatic weakness based upon that and SOB both during and after mild exertion and when laying down. I was also a chest breather vs diaphragm breather, but I'm not sure how important that was....just remember him mentioning it.

The myopathy symptoms have improved over the last year. Most of my current SOB is known to be cardiac related. I'm sure there is still some diaphragm weakness, but I'm thinking it's mild.

Hi. I want to update you with my bronchoscopy and with the result of the biopsy.

Good news and bad news.

Good news : I dont have abnormal cells. All kinds of germs, bacteria, viral, fungi have been tested but all negative, except for a little Klebsiella (not sure of the spelling). Doctor explained that this kind of bacteria is common to all of us. Doctor said I can stop using the inhalers as my airways are clear.

Bad news: Doctor does not know what is causing the nodule.

Diagnosis : Restrictive Lung Disease

I am just as scared to this condition as it does not respond to any medications.

The doctor seems to believe that my lung condition is an autoimmune disease related. I am seeing the rheumatologist this week for the follow-up.

My nerve pain has been having a field day for weeks now and so is my SOB. I think my nerve pain has gone into another level of pain, meaning more painful!

I dont know what I am doing that makes all my symptoms worse. I follow supplements religiously, eating healthy foods and exercise (even sometimes my body seems to just lie down).

THis combination of SOB and prickly skin and painful feet/legs is just really so much.

could the nodule be an encapsulation by your lung of something you inhaled which it wasnt able to eliminate? for instance i have microscopic glass shards in my lungs that continuously caused microscopic cuts and which in a few places have become encapsulated as a defense mechanism of the body.

how was the broncoscopy? was it painful? a broncoscopy could be in my future somewhere down the line. hopefully not.