Those Of You With Breathing Issues-Did You Push For Testing?

[dkd]

For those of you with breathing issues, did you push to be tested (and what tests did you have?) or did you just chalk it up to dysautonomia and accept it?

My primary doc sent me for a pulmonary function test that was interpreted as "possible neuromuscular disease" and she referred me to a pulmonologist. He wants to repeat the test and then he said about the only other thing he could do was a bronchoscopy to look down in the bronch tubes. So, to me that's just looking for an obstruction. My symptoms come and go, so I don't think there's anything structurally wrong in there.

So, I don't know what to do? Do the testing or just say it's 'probably' the dysautonomia?

I have tightness in my chest and throat and get short of breath when standing and in the heat (shower and when it's hot/humid outside). Also, just walking around a store.

I had a TEE (transesophogeal echocardiogram) that my neurologist ordered back in january when he was thinking that maybe I'd had a TIA, that said I have an intrapulmonary shunt, but the pulmonologist said that that would not be causing my symptoms.

I'm just so sick of doctors and most of my tests have been normal, I feel like it's just the dysautonomia and there's nothing that can really be done about it anyway

[kim5204]

I always feel short lf breath. what test did the pulmonologist do?

[SarahA33]

dkd,

what is your heart rate? I have the same symptoms, shortness of breath, tightness, and even sometimes chest pain that feels like it's being squeezed. This was all found to be because my heart rate is so high it results in the inability to sometimes speak, walk, etc.

I'm sorry you have to go through all of this. I really know how frustrating it can be. Like Kim asked...what kind of testing did they do for you?

thanks for sharing and sorry you are going through a bit of a rough patch right now

[dkd]

The doc just did a regular pulmonary function test. The pulmonologist wants to repeat it, thinking it might really be normal.

My heart rate stays around 70 sitting and 80 standing, but I'm on a beta blocker (before that it was resting around 100, standing was over 100).

Thanks

[kayjay]

I went to several allergists and a pulmonary specialist years ago. The pulmonary doc sent me to Johns Hopkins- long story short my breathing problems were pots and for the most part are better. I used to be short of breath even talking on the phone.

I do not want to discourage you from getting any testing done that may help you... But treatment of my POTS eventually improved my breathing.

You might want to consult with your cardiologist.

I'm editing because I didn't explain well. I meant that for me knowing my heart was healthy helped me not worry about the shortness of breath. It isn't "resolved" but it is better.

Best wishes!

[Chaos]

Interesting that your test was interpreted as "possible neuromuscular disease". I had normal pulmonary function tests back in 2009 before I got the POTS diagnosis when we were still trying to figure out what I had. But recently on cardio pulmonary exercise testing the results said I was producing too much CO2 which could be a sign of pulmonary disease. I was just chalking it up to the dysautonomia because like you, my symptoms come and go.

For me, it seems like there is the shortness of breath I get when I'm having tachycardia, and then other days there is the shortness of breath/breath hunger that seems to go along with feeling super weak. Those days it almost feels more like it's an energy metabolism thing where my muscles don't have the energy for me to breathe effectively rather than because of tachycardia. I know my anaerobic threshold is abnormally low so that may be part of it and I may just be going anaerobic even earlier than usual. That might account for the increased weakness, muscle ache/burning pain and tachypnea with even tiny bits of exertion that occurs on those days. Excess CO2 is a byproduct of anaerobic metabolism so that could be what's going on for me. Wish I understood what was causing THAT to happen though.

Like you, it seems like if there was a physical constriction or something they were going to find with testing, I would feel it. Most of the time, even when I'm feeling "short of breath", if I sit and really focus on my breathing, I can take full deep breaths, so I don't personally feel like the restrictions are in my lungs. It feels more metabolic to me.

[Gemma]

Hi everyone. Do any of you have chronic cough. I have chronic cough for a year. Had pulmonary ct scan, pulmonary tests, and methacholine challenge test (to check for asthma). All negative. Also, had skin allergy test done and nothing. Have been checked by ENT doctor and all he saw was a little redness of my vocal cords, so was on Nexium for acid for 2 month, but still cough. Its driving me crazy. Sometimes i feel like i have to cough to get my air out. Also, sometimes feel stabbing chest pain when I inhale deeply. Pulmonologist doesn't see anything wrong with lungs or bronchus. ENT doctor recommends to do bronchoscopy, but I do not understand whats the point if I had pulmonary ct scan done and there was no obstructions.

[Relax86]

DKD ~ I had the same lung test which came back normal. At the time I was having SOB, tachy, just didn't feel like I had enough air. Couldn't seem to catch my breath, significant fatigue with minimal exertion. My testing was normal. So I didn't push to look harder as I just chalked it up to dysautonomia. I did get better. For me, low doses of hydrocortisone significantly helped my breathing and eventually I weaned the HC and stayed off. I would see results in my breathing issues within 10 minutes of taking half of a pill (5mg). I had the same symptoms in the shower and still have poor tolerance to heat and humidity. My BP and HR are now closer to normal. I'm unmedicated at this time but I still get a few triggers and symptoms. I had a blood test that suggested blood volume issues so I committed to stopping most of my bloodwork. I was able to make that decision b/c most of my important testing was behind me (The lung function, cardio work up, MRI's, and numerous rounds of blood work that found just a few things). Once I stopped the blood work some things improved. Others improved with slow progression of exercise. Other symptoms improved with time and now I meditate.

Good luck in finding the solution for you. It can happen.

[spinner]

Im so sorry youre frustrated, all you want is a diagnoses, and a cure.

I definitely demanded breathing tests, normal, at mayo clinic.

The problem is that the "RESULTS" dont indicate your level of exertion to get enough air.

You could be at 99 percent saturation with a normal heartbeat. But how hard are you struggling to breathe?

This can become an issue in very rare conditions such as guillame barre. I may have spelled that wrong.

[spinner]

were you checked for laryngeal reflux or acid reflux?

Hi everyone. Do any of you have chronic cough. I have chronic cough for a year. Had pulmonary ct scan, pulmonary tests, and methacholine challenge test (to check for asthma). All negative. Also, had skin allergy test done and nothing. Have been checked by ENT doctor and all he saw was a little redness of my vocal cords, so was on Nexium for acid for 2 month, but still cough. Its driving me crazy. Sometimes i feel like i have to cough to get my air out. Also, sometimes feel stabbing chest pain when I inhale deeply. Pulmonologist doesn't see anything wrong with lungs or bronchus. ENT doctor recommends to do bronchoscopy, but I do not understand whats the point if I had pulmonary ct scan done and there was no obstructions.

[dkd]

Im so sorry youre frustrated, all you want is a diagnoses, and a cure.

I definitely demanded breathing tests, normal, at mayo clinic.

The problem is that the "RESULTS" dont indicate your level of exertion to get enough air.

You could be at 99 percent saturation with a normal heartbeat. But how hard are you struggling to breathe?

This can become an issue in very rare conditions such as guillame barre. I may have spelled that wrong.

Interesting that you mentioned Guillian-Barre. I had thought of that several years ago after I got a flu shot--I had pain and numbness/tingling in the arm that I got the shot. Then tingling in my left foot. I still have that now. When I read about Guillian-Barre though, it sounds very debilitating. I'm still working, driving, etc.

There's so many of our symptoms that could be any number of diseases/syndromes. It gets so confusing at times.

I bought a finger pulse-oximeter a while back to be sure my oxygen levels were ok, so I just ignored the shortness of breath since my O2 levels were ok. But now, I can't really ignore it anymore.

I guess I'll go ahead and do the repeat pulmonary function test, but I don't think I'll have the bronchoscopy.

Thanks all!

[Gemma]

Hey dkd, which pulmonary test you are talking about. Is it the one where they tell you to breath in a tube and then the computer measures your lungs capacity. Or is it some other test you are talking about.

[Gemma]

Hi spinner. I had endoscopy done, so I guess that checks for gerd, and alsoI had an ENT doctor put a tube thru my nose to look at my vocal cords, so I assume that one checks for laryngeal reflex. Am I right? Are there any other tests that check for it. So far for my cough I had those two done, then a methacholine chalange test to check for asthma and also those regular breathing tests that they do in the office where nurse asks you to push as hard as you can when you breath out. Do you know of any other tests that I can maybe ask my doctor to do for me. Thanks.

[dkd]

Hey dkd, which pulmonary test you are talking about. Is it the one where they tell you to breath in a tube and then the computer measures your lungs capacity. Or is it some other test you are talking about.

Yes, that's it. I did a whole set of breathing in and out of a tube, and then had an inhaler and performed the same tests again. It showed that my "maximum voluntary ventilation was reduced which is consistent with respiratory muscle weakness."

[Gemma]

Hmmm, thats interesting. What did the doctor say about it? Maybe do it again. I had it done 3 times, 2 times at allergy doctor and one time at pulmonologist, all normal. What about your lungs, are they normal. My grandpa was showing low results on those pulmonary tests, but he had emphysema. I am pretty sure thats not what you have, but i thought pulmonary breathing tests are to see lung capacity. I though they use some other tests to measure your muslce function, but I might be mistaken.

[Katybug]

Dkd,

I had the basic pulmonary testing which was normal but if it had been abnormal, I would have pushed for any and all relevant testing to be completed, especially if a possible neuro muscular disease was on the report. Have had the blood work up for all the types of myositises? If not, that's an easy blood test to get the ball rolling....you can actually find a comprehensive list of what the blood tests are, including auto antibodies if you look up the various myositises in Wikipedia(polymyositis, dermatomyositis, and there's one more I can't think of.). Also, I believe bronchoscopy would also allow the doc to see inflammation of the lining of the bronchial tubes, not just obstructions, similar to how endoscopy allows the doc to see inflammation of esophageal lining from gastritis that can't be seen on external diagnostics.

Also, if you have any suspicion of mcad, you should talk to your doctors about the contraindications between mcad and taking beta blockers. I had shortness of breath prior to taking a beta blocker. When I got the pots dx, the doc put me on beta blockers. This was prior to my mcad dx. My chest compression, pain, constriction, shortness of breath, continued to progressively get worse. I assumed itwas the pots. Then, I got the mcad dx about 1 1/2 yrs later. My research led me to finding that bb's and mcad are contraindicated. My immunologist agreed and had me discontinue to bb's. My breathing/chest issues have improved since this change by about 50%. So, still not perfect but better.

[dkd]

I've read that before on here, that beta blockers made people's breathing worse. I don't know what I'd do about my heart rate though if I didn't take it???

I did a little self-trial of taking Zyrtec for a few days to see if it helped my breathing any. It didn't.

I looked up the myositises. Sounds like a possibility. I had a serum CPK recently that was normal. Something to think about though--thanks.

[Gemma]

Hi katybug. How did you get mcad diagnosis. Can my regular allergy/immunology doctor test or it, or it has to be someone who specializes in it? Thanks.

[Gemma]

Hi again. I just spoke to my allergy/immunalogy about getting tested for mcad and he said he can order a test for me to check tryptase levels (i think thats what he said). Is this a correct test that i need to do to get tested for MCAD or is there any other tests. He said people with mcad usually break into hives, which I don't have. I do have other symptoms like sensitive to a lot of meds, sometimes break into hot flashes, lightheadness and dizziness, chronic dry cough which nobody can figure out what it is from, fatigue everyday. Well he agreed to test me for it. Any advise on the testing please. Thanks everyone.

[Katybug]

Mcad is not an easy diagnosis which one test can rule in or out. Tryptase tests may indicate something if you happen to have a major degranulation within a couple of hours prior to the test. But you can also have a major mast cell reaction and not have elevated tryptase. Any immunologist can diagnose you if they are willing to learn enough about it....it often is a clinical diagnosis taking into account a conglomerate of symptoms and having ruled out all other differential diagnoses. I know Dr. Afrin, in SC, has a long list of indicators that he tests for. Maybe someone who has seen him can give you a list of those other blood tests. My immunologist was familiar with mcad and was more willing to make the dx without the long list of tests. Plus he is much more of a "if the treatment won't hurt you and the tests won't change the treatment, let's try the treatment and see if it helps" kind of guy. He tries to avoid running tests that are not definitive. But, my meds help so we're sticking with it. Treatment is a combination of H1 and H2 antihistamines. Sometimes some other meds including Gastrocrom. While a lot of folks with mcad do have skin rashes as a symptom, it is not a qualifying factor. Mcad reactions can range from mild skin irritations to full anaphalactic shock.

[looneymom]

Dkd

When my son spent two weeks in the hospital, he was also having these problems. Test were order and he failed them. Doctor blamed it on lack of effort. However he had not been diagnosed with POTS yet. Read up on the vagus nerve. It will cause problems with breathing. After what I read and researched, I did come to the conclusion it was a problem with the nervous system.

Rachel

[Agreeky]

My two PFTs indicated upper airway obstruction. My ENT checked down my throat though and it looked fine.. Lung doc suggest cat scan but I never went. Already been exposed to very much radiation with other tests. I want to push for bronchoscope though...

[dkd]

Dkd

When my son spent two weeks in the hospital, he was also having these problems. Test were order and he failed them. Doctor blamed it on lack of effort. However he had not been diagnosed with POTS yet. Read up on the vagus nerve. It will cause problems with breathing. After what I read and researched, I did come to the conclusion it was a problem with the nervous system.

Rachel

I had done a little reading about the vagus nerve before my last neuro appt and I asked him if it could be causing all my symptoms and he said no. But, from what I read it branches off to the trachea, esophagus, lungs, diaphram--all places that I feel pressure/tightness. I don't think there's anything they can do for it anyway, right???

The pulmo wants me to repeat the breathing test because he thinks I didn't do it right the first time. Now that I have had one before, I should be better at it the second time around. Weird thing is, that I usually do not have the shortness of breath when I'm at the doctors or when I was doing the breathing test, so I wonder what it would look like when I was really feeling it?

[Chaos]

dkd- there are some types of "bodywork" that can be done that work on the vagus nerve. It's sounds a little woo-woo sometimes, but having had it done to me, and having done some continuing ed classes on performing it, it's pretty amazing. Some Physical Therapists are trained in it and a few specialized massage therapists.

[dkd]

Hmmm, interesting. I'll have to google that. I've been thinking of going to physical therapy anyway to get some exercises that I can do. I feel like I'm just getting more and more deconditioned

Do you know anything about what's going on with the vagus nerve when it's acting up? It is being pinched? Over stimulated? Under stimulated? I don't really understand much of how it works.

Thanks