Breathing Trouble from Sarcoidosis?

[Riker1964]

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.

[kcmoon]

A related discussion, just reading, and I thought I'd input was started.

[Jane2]

Thanks Brokenhearted

I had a full eye exam about 5 months prior to diagnoses and apart from being longsigted my eyes were healthy - I have thought about getting them checked again - though - doctors don't seem to be as bothered as I am by the lines in my vision.

thanks for your kind response
J

[brokenhearted]

Have you had your vision checked since you found out that you have sarcoidosis? This disease can affect your vision so it is very important to get checked! I am not sure what the treatment would be - probably eye drops.

[Jane2]

Hi
Just reading through your messages and I have a few points to
make - I am Astmatic but was diagnosed with Pulmonary Sarcoid
in December after a biopsey on a grauloma - Thankfully it was
Sarcoid and not what the doctors feared. Anyway although I am Asthmatic my breathing was no worse than normal and the abormality was found in a routine x-ray.  initially I was told I had Hyperventolation Syndrome - So my breathing does seem more
like over breathing - like there is too much air in my lungs.
I am getting no treatment for sarcoid as PFT's just showed Asthma and the sarcoid is not have a bad affect - yet.
I wonder if any of you are getting the following symtoms
which alerted me to have myself checked out initially and
which still are bothersome but under control - numbness in arms
and face (intermittent), nightmares, tiredness and a general feeling of weakness, also black marks in line of vision.

Regards
J.

[Riker1964]

poohscooter:

Did you have general anethesia for your surgery? I have heard of people having trouble breathing after general anethesia. I am not sure why, but I have read stories on the web about this. Maybe you could ask your doctor about that.

An update on me, I saw my pulmonologist today, he said I don't need to treat my sarcoid. Matter of fact, he seemed like it's no big deal at all. I asked if it was possible to know how long I have had this and he said I could have had it all my adult life. Well, I had a chest x-ray in 1998 that was normal, so I have not had it all my adult life. He also said I do not have to have regular CT scans to see if it is improving. My question is how the heck do we track it, whether it is active, dormant, or gone? I have also read on the Internet where some people have actually died from Sarcoid. I'm now wondering how much faith to put into this doctor. Unfortunately, there are no sarcoid specialists in my area for me to check in with. I'm not sure what to do now. Perhaps nothing, as he seems to think. Who knows, I sure don't.

I don't seem to have symptoms, other than breathing issues that finally seem to be going away, I wake up 4-5 times each night, and I have alot of belching going on. These are all symptoms of Sarcoid according to one website I visited. I hate going to doctors, and through all sorts of tests, and never getting a totally straight story. Anyone have any further suggestions for me?

Thanx.

[poohscooter]

Last night I had the sleep test.  Not very comfortable and I won't know the results until a week later.  Today I had the battery of pulmonary tests.  Wow.  That was very difficult.  Made it even worse to breath!  I will get those results next week also.  Now I just have to wait.  The doctor did say he thinks the sarcoidis is probably not the problem but he wants all the test results to come in first.  This is very frustrating!  I will post comments next week after I know more.  If it is not sarcoidsis, then what could it be and why did it start with such a difinitive onset of symptoms (in recovery room)?  Through this ordeal I have realized there are way to many people with breathing problems in our society.  Why?  Is it like this in other countries?  Thoughts to ponder.

[brokenhearted]

Your symptoms certainly sound like they could be caused by sarcoidosis. I am happy that you found this website to try and find answers as I have learned that sometimes we must take issues concerning our health into our own hands. So often doctors and others think that anxiety is the cause of things, and that can be dangerous! Never stop looking for questions and searching for answers.
My husband had symptoms simular to yours three years ago, and sarcoidosis was never considered. We had never heard of such a disease. He was never given the proper diagnosis or treatment.
I would also question your meds. If they don't know what is causing your problems, how do they know whether it will hurt of help?
Please post after you have heard from your doctor.

[poohscooter]

Your thought certainly makes sense.  It may be because right now they have me on bed rest and tranquilizers and blood pressure medication along with beta blockers.  I have not had much movement since this started (except for the stress test which nearly killed me, my pulse rate after 3 min. was 178!).  There are times when I am still that it bothers me but not as many as when I am moving (which could simply be showering and dressing).  As I said, I am asking the pulmonologist today and it will probably take a couple of days to find out.  Some of what I have read from other web sites states that it flares up, can be asymptomatic and can even resolve itself.  There seems to be minimal information for this disorder.  My thought is that when I had my Dec. surgery (which was #3 surgery in 4 months - all for kidney stones) that the anesthesiologist aggrevated an already present situation and now I am drugged up so heavily I sleep alot.  I know I sound as if I am grasping at straws but I really really want to get better, go back to work and see my students.  I will be sure to state all information to dr. and let you know.

[Riker1964]

I have not had a chance to ask my pulmonologist yet, but I was under the impression that if you had breathing trouble from sarcoid, wouldn't it be every day instead of hit and miss? I mean the sarcoid is there everyday, why wouldn't the breathing trouble be there every day, all day long.

[poohscooter]

Sorry about that.  I will be telling him about the sarcoidosis.  I spoke with a friend who is an RN and she said she even found information in an outdated nursing textbook.  I am somewhat confused though about what the treatment is.  Sometimes I feel fine, like now but then later I may also be sitting and doing no physical activity and can't breath.  Hope this ends soon.  I have many children waiting for me to return to.
God Bless,
Poohscooter

[poohscooter]

I am so glad I found this site.  In mid December, I had surgery to remove a kidney stone.  Dr. could not get to the stone and I had to pass it on my own (3 long weeks).  Anyway, I had no other health issues before surgery (I am 37 year old female)and when I got to recovery, I suddenly had hypertension.  I have had a problem with this ever since the surgery.  I also have had trouble with heart palpitations, high rate pulse and extreme difficulty breathing.  My g.p. said it was high blood pressure althought she could not account for what caused it so suddenly.  She tried several drugs but none have brought it down all the way.  In the meantime, I can't breath.  It teach school and could not even make it into the building the other day.  I was concentrating on breathing so much, I could not walk.  It was very traumatic having 911 called to an elementary school when my students were arriving.  Of course the paramedics, kept saying "you seem upset, what is wrong".  Dah, my students were watching their teacher be wheeled into an ambulance.  I teach kindergarten!  Since then I have been to e.r. several times.  I have had every known test possible (lung scan, chest ex-ray, stress test, etc.).  My g.p. thinks it is panic attacks.  That is not my problem, this all started after the surgery.  Yesterday, I went to the pulmonologist and he was completely stumped.  My oxygen is fine (98%).  But I was huffing and puffing like I had just run a mile.  He has now had me scheduled for a sleep study (to see if it is sleep apnea) and also a kidney specialist.  No one will listen when I tell them the symptoms.  I know they have to rule out other causes, but this is frustrating.  I cannot return to work until this has been taken care of(so far 10 days and counting!).  I want my life back.  I am very active, healthy and somewhat hyperactive.  This has completely changed my life.  I feel like a 90 year old emphysema patient.  I do not smoke, drink or do recreational drugs by the way (I am a Christian who has been praying to God and he has shown me the answer).  I cannot wait until Monday to call him and tell him what I found.  Why is it that no one seems to be aware of this disorder? I want to publically thank God and everyone who is on this site because I was starting to think I was crazy and also getting depressed.  I still can't breath but I know what to tell the dr. on Monday.  Thank you and God Bless to all those who suffer from this terrible illness, you are in my prayers.

[Riker1964]

poohscooter:

What is it that you think it might be, that you will tell your doctor Monday? Asthma? Sarcoid? Let us know what your thoughts are and what the doc says. Best of luck and God Bless.

[brokenhearted]

You are so lucky to finally have your diagnosis. From what I know about this disease, in 1/2 of the cases, it goes away on it's own. However, please have regular follow-up exams, make sure you find a sarcoidosis specialist, and have your lungs re-checked. Pulmonary involvement is most common. Please let me know how your next drs appointment goes. Take care or yourself.

[Riker1964]

Just an update - I recv'd the official results from my mediastinoscopy today. I have been diagnosed with Sarcoidosis. Apparently it is only in my lymph nodes, not my heart, brain, etc.

The surgeon said it can cause me to have breathing trouble, shortness of breath, feeling like I can't catch my breath, winded, etc. I thought my lungs would have to be involved for me to have breathing trouble with this disease? My pulmonologist said my lungs were totally clean and "text-book" perfect.

Should I still consider some type of asthma as well? I don't see my pulmonologist again until Feb 13, but I will have lots and lots of questions for him. In the meantime, any advice here, with this further info I have given, will be greatly appreciated.

[Riker1964]

Is a doctor or nurse supposed to respond to my question as well? Just curious - that's why I originally posted here.

Thanx.

[Riker1964]

kellie1:

You bring up a very good point. I thought back to when this first started happening - Fall 2000. I started my current job April 2000. Never had this trouble before then. I clearly remember one day driving home when it first started in August 2000. I did take another job for a different company in May 2001 for 30 days. (Job didn't work out, so I was able to go back to my current job) But the entire 30 days at the new job, never had one problem. But it was April-May. Hmmm.

Thanx for writing, helps me to decipher things better. I'll talk to my Family Doc and Pulmonolgist and see what they say.

[kellie1]

Oh my goodness, you never said you had asthma as a child.  Because of that, I'm going to say it's asthma for sure, especially since you already know you have allergies.  I suppose it's possible for someone to have allergies and never come down with asthma, but honestly, I have 3 good friends who are all allergic to various things and have been most of their lives.  And all 3 eventually had it turn into asthma - one is severe, the other two mild to moderate.  One had only allergies until she gave birth to her first child 13 years ago, then it turned into asthma and it's been asthma ever since.  Asthma as a child almost guarantees it's asthma that you're experiencing now, and your worst trigger is whatever it is you're coming into contact with in the fall that you don't come into contact with any other time of year.  If you start reading up on asthma online, you will find stories about people who had asthma when they were children but then 'grew out of it', only to have it come back years later.  One friend of mine told me about her mother who had it as a child, grew out of it and was fine for years and years, and then it hit her again big-time when she was 50.  So based on your symptoms and what you've shared with us, that's pretty much what it sounds like to me.  And almost everyone who has asthma also has exercise-induced asthma, which you've already said has happened to you more than once.

The work connection is interesting, but I would be more apt to think it had something to do with it if you were fine every single week-end, and then not fine Monday thru Friday.  Or if you can trace back to starting work at this particular place about the same time you started noticing symptoms.  Or it's also likely that not only is one of your triggers something in the fall air, but also something at work.  I went to an allergist last year when I was first diagnosed to have the allergy testing (mine was negative for everything) and she explained to me that some people with asthma need to come into contact with more than one of their triggers to actually have an attack.  For instance, someone may be allergic to roses and a certain perfume.  Just smelling the perfume won't affect her.  Just smelling the roses won't affect her.  Which is why she can sometimes walk thru a nursery and be fine, and why she can sometimes smell the perfume and be fine.  But smell the perfume on someone who passes you in that nursery, you're going to have a problem.  If you've noticed a difference in your breathing at work more than once, it could very well be that yes, something there is a trigger for you, but it may not bother you until you come into contact with your allergy in the fall.  Then the two together are what's causing your problem and causing your lungs to work overtime.  

I personally don't like Albuterol.  I tried it once and nearly fainted, I got so dizzy.  But this was back when I was first diagnosed and it wasn't under control yet and I was still having alot of problems breathing.  As soon as I started using Advair, I was fine and haven't needed a rescue inhaler since last summer.  There are so many out there to try, that's why I said if one doesn't work, another will.  Two good ones that I've been told about and that many people seem to like is Combivent and Ventolin.  These are your rescue inhalers to be used when needed.  Advair, or inhalers that are called controllers, are used twice a day, and they're meant to keep your breathing normal at all times so you don't need the rescue inhaler.  Because you only seem to experience symptoms in the fall and are basically fine the rest of the year, you can probably get away with just a rescue inhaler off and on for when you have problems, and then not need anything the rest of the year.  You might want to ask your doctor about trying one of those to see if it helps.  But keep in mind that they may not do much if you also need a controller.  A controller not only keeps your airways open, but it also controls the inflammation that's part of asthma (hence the term 'controller').  If this is what's contributing to yours, just using a rescue inhaler may not be enough to get your breathing back to normal.  You'll know this if none of the rescue inhalers help you, because eventually one should.

You might want to go back to your doctor and ask him about trying something just to see if any of them work for you.  And please let us know how you are and what you find, as this is very interesting to all of us.

[Riker1964]

Starion:

I had extensive allergy testing when I was 12 years old...the old scratch tests on my back, plus just under the skin on forearms. I swelled up like a balloon. That is a good idea though, I should get it done now and see what is going on. I had severe asthma from birth to 3 years old, but then went away. Maybe the allergies are causing asthma or something like it to come back?

Thanx for your input!

[starion]

Have you been evaluated for allergies?  Since there appears to be a seasonal connection, one obvious thing to consider is allergies since allergens change with the seasons.  You might ask your doctor about a RAST test, to see if there is evidence of allergic inflamantion.  Of the test results show allergies, a board-certified allergist might also be helpful in pinpointing what you may be allergic to.  You can read more about allergies at www.NationalJewish.org, particularly their MedFacts & Understanding series.
Best of luck & let us know what you learn.
Aloha,
Starion

[Riker1964]

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 stuff? I am going to pickup a Peek Flow Monitor locally to try and see if I see anything worthwhile.

Thanx for your correspondence, it has helped shed some light on annoying problem.

[kellie1]

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 :)

[Riker1964]

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.

[Riker1964]

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?

[Riker1964]

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?