How do they diagnose lung problems with SJS??

[jazzlover]

I've had episodes where I am totally exhausted (because I overdid it!!)... sometimes it feels like my heart can't beat another beat. I do have A-fib, but it's not that. I also have mild thickening of the heart. So it could be that.

But.. it suddenly occurred to me that it could be a lung issue. What tests would they do to find out? A regular X-ray or what?? I will see a rheumie on Aug 2.

[mews]

It sounds like you have already seen an cardiologist, so that means he has run some tests, in those tests it would show if there was any kind of lung involvement. If your not sure talk to your Dr about it, maybe you need to see a pulmonologist to have things checked out.
Some Dr's love to say you don't need to see anyone just yet... bull! I didn't wait, I Know my body and now I'm being told that my diaphragm that pumps my lungs is only working at 67%. A year ago it was just my heart now it's everything.

I didn't mean to scare you, just don't wait!
Stay well Mary

[mebog]

My pulmonary Dr. Was the first one to think I had sjs.  I took three years to find a rheumy that agreed with him.   I was then sent to an immunologist who put me on IVgG.
So my guess would be a good pulmonaey Dr.

Good Luck

mebog

[mshistory]

A pulmonologist would probably order a CT scan and a complete pulmonary function test (which is EXHAUSTING!). Even if those tests come back normal, they may still suspect some lung involvement (just nothing too dangerous) based on symptoms. My tests were normal, but my pulmonologist suspects I have inflammation that THANKFULLY isn't causing scarring. My symptoms are persistent shortness of breath (but not debilitating), cough upon exertion, coughing when I take a deep breath, and like most of us, I get lung infections (bronchitis) easily.

[jazzlover]

Thanks..

I don't seem to have any apparent lung issues. But who knows!?

PS.. I can't think of any heart tests I've had that would have showed lung problems. Maybe the echocardiogram would have showed it??

[sass]

Jazz,  Get thyself to a good pulmo doctor.  But to answer your question on Dx lung problems with SJS is an open lung biopsy and then they still say words like "consistent with Sjogrens syndrome"  And that is quoting the top lung pathologist at the Mayo Clinic in AZ....

I never had a lung issue either.  Feb 14 , 2012 changed all that...Been a roller coaster ride since..I had a slight dry cough occasionally, then I put on some weight and thought my shortness of breath (only when heavy exertion) was due to that.  Got a slight cold from my Dad and the next thing I am in the Hospital. 

You need to see somebody soon...please don't wait.  It may and probably is not any big deal.  But SJS will and does attack the lungs.  CT scans will show a huge amount of what they need to see... My second opinion pulmo doctor, took one look at my CT, looked at me and said  "This is not IPF,,this is Sjogren's"!!!   

~sass~

[jazzlover]

My concern on that is that a CT scan has the radiation of 50-100 X-rays. UGH.

[sass]

that would be the least of your problems!!  Go CT thyself!

[bella2]

Hi Sass,
I have been waking up in the middle of the night coughing. I would say this started a couple of weeks ago. It is not every night, but so annoying when it does happen. Did your dry cough occur at night? What other symptoms did you have? I do have shortness of breath that comes and goes and lately that has been good.
Thank you.
Bella

[sass]

Hi Bella2.
I had just a plain ole dry cough for years.  Yes, sometimes it would wake me up, but mostly it was during the day..I would cough up a tiny oblong pellet of mucus sometimes or an occasional white frothy milky phlem...Had some shortness of breath with exertion.. No asthma, no other lung issues ever.  Then i got a small little cold that increased the cough some and made me more short of breath.  And wound up where I am now.   Hope that answered your question, if not feel free, to continue to ask away....~sass~

[jazzlover]

I hardly cough at all. When I went dairy free, all that pretty much stopped!

[sass]

wow, now that is an interesting turn of events.  Dairy!hmmm?? Have you ever had an allergy to Dairy before or anything?

[genko_b]

Seeing a pulmonologist is the best way to get an idea of what may be going on in your lungs. Sass is right. Even if they say nothing is wrong yet, you will be glad you have some baseline studies in case you feel your lungs are getting worse.

Genko