Pulmonary Function Tests normal - Ughhhh

[lolo1979]

Same ole' story as many on here. I have a hard time breathing.  It is worse at rest and when talking and eating, for some reason.  It just feels like I can't get a deep breath in, or enough air.  I've had this problem off and on for almost 10 years now - it was actually my first sjogrens symptom and I didn't even know it at the time.

I mentioned this to my rheumy and told her I just feel like I can't deal with this particular symptom. So she sent me for pulmonary function tests, which I just got back from.  Though I don't have the "official" results from the pulmonologist, the respiratory therapist who conducted the test told me all looked good. 

She ended the appointment by giving me advice on breathing exercises. She said sometimes if people feel like they can't breath then they start panting and that makes it harder to breath.  Or some crap like that.  All I could think was - I don't need a freaking breathing exercise!!!!  What I NEED is for my stupid freaking immune system to stop attacking every last part of my poor body, for God's sake!

So I'm curious what happens now.  My lung function tests were normal, so it must all be in my head - right?!  And if it's all in my head, then I guess I don't need any treatment.  At least that is how I foresee this playing out.

I mean, really? 

So frustrated!

[sass]

NO.NO.NO.NO.NOOOOOOOOOOOOOOO!!!! And I mean NO!!  I have a serious lung disease!!  Listen to me Please!???  Go back and look up some posts from me!!  I am sass!!

I am going to brief though everyone will laugh at thatcause I just can't be!! laugh ya'll now..hahaha

Feb 2012- had a slight cough, got a little worse, wound up in the hospital..got 3 different diagnosis there,,,tiny country hospital.  Was sent to a cardio and home on oxygen support.

Cleared by cardio pretty much with some minor stuff..Sent to a Pulmo..Already had two CT scans done at that point..2 in FEB..Went thru all the motions..consult, back for Function test, where I WAS told everything looked pretty good and fairly normal...I am still on oxygen at this point.   only because my O2 level at country hsoptial had dropped below 88.

Have another CT scan done in April....I have now been seeing the nurse practioner that goes over everything with the doc on a weekly basis.   sometimes Daily...At a visit with her she reveals that everything looks good and whe is going to sch my next appointment with THE DOCTOR to go over all my  results.  Had to wait til June for that one!

I am relieved but kinda perturbed, as I am still  oxygen, can't breath well and she is telling me it is all good.  shoulda been happy with that one if I must say.

  finally go back to Pulmo with Hubby in tow...Basically he looks at us and says there is nothing he can do for me, I have a terminal ling disease---IPF and the only thing he can offer is a lung transplant!!  I was like whoa,,why am I just hearing this now..what happened to the everything is clear...little trapped air in the lower lung...just need excercise!!!  sound Familar yet.. He did tell me to get a second opinion so that I would have faith in the fact I have to have a lung transplant..left his office and went shopping at Sams...we were kinda shocked.  they talked Hospice and all..

So second opinion doc looks at the same films and looks me square in the eye and says "this is NOT IPF...this is (wait for it)  Sjogrens. You need a good Rheumy
"  He got me in that day and in for another CT scan..
Spent 12 days in the hospital for an open lung biopsy...had to be sent to THE MAYO Clinc in AZ, because the lung pathologist (head person) could not discern what she was looking at.  St Lukes Hospital in Houston is a major Heart and Lung Institute Hospital.

Mayo clinc comes back saying I have an extremly rare lung disease called Constrictive Broncholitis,  just a slight better than the IPF death sentence DX....But they di not know how to treat this one and it is so rare and no studies have ever really been done on it...because mine falls under the Connective Tissue Form makes even more rare.
There has never been a paper published on Constrictive Broncohlitis concerning Sjogrens.

And that is what mine is....With a *good* pulmonary function test a few months ago..

Feel free to ask away!   ~sass~

[DragonflyC]

That difficulty feeling like you're getting enough air (even though your lungs look fine when doctors examine them) is called dyspnea (air hunger); it's not uncommon in Sjogren's patients.  Here's a definition from the Sjogren's Syndrome Foundation: http://www.sjogrens.org/home/about-sjogrens-syndrome/glossary

Here's a study about lung impairment in patients with primary Sjogren's that provides some more insight: http://www.ncbi.nlm.nih.gov/pubmed/9272293

When I first developed dyspnea, doctors thought it was asthma, but it definitely wasn't (pulmonary tests were fine; inhaler didn't help). Venus Williams had the same thing happen to her (lung issues, asthma diagnosis though the treatments didn't work, and finally a Sjogren's diagosis). Advair did help me, but I now realize it was because it's a corticosteroid (which calms down autoimmune processes in the body), not because I actually had asthma.

One thing that has helped my dyspnea is getting my thyroid levels in range (I don't think there's a direct connection; I just think my body functions poorly when I'm out of range). You might want to get your TSH (thyroid stimulating hormone) tested. If you do, make sure they give you a number instead of just saying "normal" (you want it to be under 3--probably even under 2.5--but labs will call it normal up to 5 or even 5.5).

You might also be interested in this thread discussing lung issues and Sjogren's: https://sjogrensworld.org/index.php?topic=19014.0

I hope that helps!

[mshistory]

DragonflyC, THANK YOU! I've been through the PFT and CT scans and everything comes back normal, but I'm so symptomatic that my pulmonologist was treating me anyway (until recently when I was told to go off all medications). I'm going to look dsypnea up and see if that could explain my symptoms!

lolo, I'm sorry - I know the frustration. I've been there... was even told I had asthma, but passed the methacholine challenge. It's frustrating, I know, but the good news is that our scans are CLEAR!! After what poor sass has been through, I just keep that in mind and keep track of any changes. When something does change, I'll be quick to let my pulmonologist know!

[irish]

I flunked the methocholine challenge back in 1980 and was told I had asthma. I did not act like an asthmatic nor did I have episodes like most asthmatics.

I have been seeing a pulmonary doc the past few years and had slowly worstening PFT and then this last winter I had a normal test. I was sure surprised. Then I got to thinking that I was on low dose Plaquenil and maybe it was enough to clear up some of the inflammation in my lungs---I am also on monthly high dose IVIG for 6 years.

Now, I am going to bring up the possibility of myathenia gravis. This disease attacks the enzymes that carry the impulse to move the muscles. For many, many years I would have episodes of weakness---not terrible, but I would sort of plan my work at home and outside so that I could rest a lot. I also had times when I felt like I could stop breathing. I would walk down to get the mail and be short of breath. Sometimes I would get back up by the house and bend over with my hands on my knees just struggling to get a breath.

Well, low and behold, I have myasthenia and that causes the muscles to act like they are paralyzed--almost. My weakness was in my arms, legs and diaphram. One of the symptoms of MG is weakness in the eye lids with them sort of lagging or drooping. Another is arms that can't hold a blow dryer long enough to dry your hair. Another one is climbing stairs. Sometimes I could climb stair fairly easily and other times I thought I would die cause I was weak and couldn't breath.

Be sure to ask your docs to check for MG. Do the acetycholine blood test and the antistriated muscle antibodies blood work. This is another more in depth test. Many docs want to do the EMG or stick needles in the muscles to check things out. Mine was negative and a large amount of people have negative tests. If it was me I would not even bother with that test.

One simple test is to take Mestinon ( pill which helps replentish the impulses that help move the muscles) when you have weakness. I don't know if any doc will let you do this. There is another test that they can do to check for MG but I can't remember the name of it right now.I just beg of you that you see a neuro and get the MG ruled out. Anyone who has sjogrens and thyroid issues needs to be checked for MG if they are having a lot of weakness. Good luck to all. Irish

[lolo1979]

Thank you all so much for your input.  It just blows my mind that my lung function tests can come back normal, yet I have trouble breathing while I talk, eat, sit still and do nothing.  I mean, what the heck? 

So far, over the last two months, I have been to the gastroenterologist, endocrinologist, rheumatalogist, pulmonologist, and even had to wear a holter monitor due to heart palpitations.  The holter monitor also came back normal.  Thryoid tests came back normal - numbers looked good - I checked.

Blows my mind how these things are not picked up on in standard tests!

And it's awful because I need to be treated, and yet how can they treat me without knowing what specifically my breathing issue is??

I am going to call my rheumy today and ask her to prescribe an inhaler to try.  I just don't know what else to do. 

And from there, I guess I will push for more testing based on some of your suggestions.  For one, I don't think they did the methacholine challenge yesterday.  Isn't that the one specific to asthma? Why the heck would they not do that one??? 

Still frustrated today after a full night's sleep!!!

[Dolly Dimples]

Know what Lolo, stress can produce breathlessness so easily.  I challenge anyone here to say we dont get stressed out pretty regularly. Try Joes "I am calm" breathe in slowly  theory. Just a thought,
                                                                                         Dolly

[irish]

Have you had your medications assessed to see if they are interfering with anything. Sometimes blood pressure/heart meds can have some weird side effects.

Shortness of breath when talking can happen with myasthenia gravis  (generally more sporatic events) and I have seen it is heart patients. Did you say you saw cardiology??? Good luck on this qwest. Do not give up. You will find the reason if you perservere. Irish

[Bicycle Rider]

Wow, so much for me to learn about. I was just diagnosed with Sjogren's after a year or two of not feeling good. Fatigued, some shortness of breath and then starting in April my body went into a tail spin with GI problems, heart palpitations, ear, jaw and throat problems. I went through a bunch of tests with no result until my PCP did the ANA, SSA & SSB and they all lit up positive for Sjogren's.  I also seemed to have a bacterial infection that would not go away and had to go on antibiotics three times, it seems like it is clearing now.

Up to this point I was a long distance cyclist, however seem to have increasing difficulty with my lung capacity.   Walking up stairs puts me out of breath and I have days where I feel I need to really draw in deep breaths to try to get more. This discussion has given me some ideas to ask my doctors about. I'm so glad I joined this post

There is so much to learn, it is almost overwhelming. I am really struggling with reducing my physical activity, however I get so fatigued. I also can't go on Plaquinel because of a pre-existing eye condition.

I guess I will read up. thanks all

[Skylar]

Am I the only one who thinks having normal Pulmonary Function test results is good outcome? It means the problem is elsewhere and your Drs need to continue to search for the source.

[lolo1979]

No Skylar, you are right. Of course I am glad that the results were normal.  What sucks about it, however, is that it means I am going to have to go to a lot more doctors appointments, and take a lot more time, to figure out what's really going on. 

And what sucks about that is ...in the meantime -I can't breathe.  I work full time and am a mother to a 3 and 1 year old.  To not be able to breathe while I'm talking, eating, etc...this is extremely difficult.  I am miserable.  And since the lung tests probably came back normal (still waiting for my rheumy to return my call), this means that I am going to be feeling this way for a while.

[Skylar]

lolo1979 - ((((HUGS)))) I hope they figure it out quickly.

[lolo1979]

Me too, thank you skylar!