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.

[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.