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Breathing Trouble from Sarcoidosis?
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MedHelp Member's Question

Breathing Trouble from Sarcoidosis?

by Riker1964, Jan 26, 2003 12:00AM
I just had a Medianstinoscopy and they ruled out cancer. They think it is Sarcoidosis. I had a bronchoscopy in Dec and the lungs were "textbook perfect" according to my Pulmonologist. I also had a methacholine challenge were I dropped to 14%, but doc says I do not have asthma.



My question is, I have been having issues breathing for sometime (fall of 2000, fall of 2001, and fall 2002-present) If my lungs are clear, what can be causing this trouble breathing issue? It has been very strange presenting. In Fall 2000, it just felt like I had apnea during the day, on and off. In Fall of 2001, if felt like I could not take deep breaths, and was not "air-satisfied". In Fall 2002 to present, it feels like my lungs already are full of air when I try to breathe. No one has been able to tell me what this is, even if it is anxiety.



Could it be Chronic Hyperventilation syndrome? Vocal cord dysfunction? Asthma? Anxiety? What can I do to fix it? This happen at rest most of the time. Am I just out of cardiovascular "shape"?



Thank for any light you can post on this.

Member Comments (26)

by kellie1, Jan 26, 2003 12:00AM
To: riker
Strange - does it only happen in the fall?  If so, is there possibly something in the air at that time of year that's triggering it?  It could very well be mild asthma that is only triggered by specific things at that time(I have a friend who has asthma, she's fine most of the year but September there's something in the air that really bothers her).  You could also be experiencing a bronchial spasm which is triggered by something you're coming into contact with.  Some doctors can confuse a spasm with asthma because they are very similar and are both caused by a trigger or something you're allergic to.  If you live in an area that experiences cold winters, could be too something that happens when you begin to turn your heat on.  If it's truly only in the fall, you may have to do some soul-searching to track down what it could be that happens at this time of year and not at others.



Honestly, it doesn't sound to me like Hyperventilation Syndrome, though Shana would be the one to ask about this (you may find her name farther down somewhere).  It could be anxiety, though I find it odd that you're only experiencing this in the fall.  But then, a good doctor would probably ask if there is something happening during this time of year that might be causing you undue stress....pending holidays?  This is a very stressful time of year for many people; could be partly what is causing your symptoms without your being aware of it.  Anxiety is not something you always feel, so yes, it could be all or part of the problem.



Just out of curiosity, do other people notice you having trouble breathing?      



by Riker1964, Jan 27, 2003 12:00AM
That's how it seems to be - in the fall mainly. Very strange. I did have some trouble maybe a couple days during the other parts of the year, but only one day, where as the fall it seems like almost everyday. I do have allergies to just about everything though, maybe ragweed in late Aug starts bronco-spasms, and I get "panic" from that, and that anxiety cycle keeps it going?



I don't know, all I know is the breathing doesn't seem natural and relaxed, like I have to work at it. Sometimes it feels like I am just tired of breathing. I hear no wheezing, my chest doesn't really feel tight. One day in the summer while riding my bike, it felt like I could not get past a certain point in breathing. While breathing in, it just stopped short of a "full" breath. Next day - fine.



One day I was jogging, trying to get my fitness level up, and at the end of my run, it felt again, like I could only breath in to a certain point, just short of a full breath. This lasted until I recovered from the jog.



One year my family doc gave me Aerobid and that seemed to help, but next year, it was back. This year it has lasted longer than usual.



I should be fine - the pulmonologist said my lungs were "text-book" perfect during bronchoscopy, and there was no cancer or sarcoidosis present in the biopsies.



I just wish I knew what was going on so I can correct it.



Thanx for your comments!



by Riker1964, Jan 27, 2003 12:00AM
Forgot to mention, others do not seem to see me having trouble breathing. I do not "gasp" for air or anything like that. I do find myself taking alot of deep breaths to "test" my breathing capacity, when this happens.

by Riker1964, Jan 27, 2003 12:00AM
Here's a thought, at work I sit by a laser printer, fax machine, and a huge copier/printer that blow ozone out the side that faces me. Although I only seem to have breathing issues in the fall, could these machines' exhaust be causing problems?

by Riker1964, Jan 27, 2003 12:00AM
Ok, in my never ending struggle for an answer, I thought of something else. When I had my mediastinoscopy, the anesthesia doc said I was a difficult intubation. Could this cause me to have this type of problem?



by kellie1, Jan 28, 2003 12:00AM
To: riker
Why were you a 'diffcult intubation'?  Did you also have trouble breathing after you woke up?



You know, from what you described, it sure sounds like asthma to me, albeit a mild case.  You have alot of the same symptoms I had, which were years of not 'breathing right' during some forms of exercise, sometimes not being able to take a full deep breath, etc.  Nobody ever said I had asthma, though I suffered from breathing difficulties off and on for years, once to the point where I went to a pulmonologist and had a breathing test, like you did.  Nobody mentioned asthma.  But last year it hit me full force so now we know that's probably what was wrong all those years.  But because it was only intermittent, like once or twice a year, nobody was real concerned.  Sounds alot like yours, doesn't it?  I'd be on a treadmill and have to stop every now and then to take a deep breath, then I'd get back on and keep going.  Many asthamatics have problems when they exercise if they don't use an inhaler.  And because yours is only happening in the fall, I'm still going to say it's asthma and something in the air is your trigger.  And the fact that you have allergies kind of points that way, too.  Many people with allergies end up with asthma when they get older.  

Did your doctor ever give you an inhaler to try to see if it would make a difference?  They can help tremendously, but you may have to try several before you find one that works for you.  

As for the breathing tests, they aren't 100% accurate.  The one you had has been known to give a false positive or a false negative, so you may have a mild case of asthma but the test won't necessarily show it.  Usually when a doctor just isn't sure what is going on or isn't sure if it's really asthma or not, the best way to find out is to simply try an inhaler and see if it helps.  If it's asthma, you'll start to feel better.  But many people expect it to work right away, and it takes time for that.  Or they don't realize how many inhalers are out there, and if one doesn't work, another one might.  It takes some trial and error to find what works best as everyone is different.  You might want to ask your doctor to give you one to try.  It can't hurt but it just may help, and then at least you'll know what it is.

I hope you feel better soon, spring is coming so maybe that's a good sign for you :)

by Riker1964, Jan 28, 2003 12:00AM
Here's something else I noticed. I was not at work Thursday, Fri, Sat, Sun last week. I had just a little trouble breathing Thursday, but nothing Fri, Sat, Sun. I got back to work Monday and late morning, early afternoon I felt like my chest was tight and had a little trouble breathing. No wheezing, just a tightness on and off. It could be something here at work, I'm just so tired of guessing.

by Riker1964, Jan 28, 2003 12:00AM
They said I was a difficult intubation because my chin is "pushed back". (somewhat looks like I don't have a chin)



I had no trouble breathing when I woke up though.



I do have Aerobid and albuterol I can try. I was given these in November but only used the albuterol when it felt like I needed it. That stuff makes my heart race and I feel shaky inside bad. I do use a spacer with it.



Do you think there is someother test I can get to clearly ID this breathing