A few years ago I had a similar problem and visited a pulmonary specialist. He gave me an Advair inhaler. It cleared up my chest in a couple of days. See https://www.youtube.com/watch?v=jajf3OUFtEk for how to use it or a similar type of inhaler.

Many of us, while trying to figure out why we were short of breath, have gone through the breathing tests. Generally they miss some of our problems as MG doesn't always show up with these at rest tests. Our problem is more one of breathing problems with exertion, as we have to breath faster, our muscles tire, I can't quite remember it all, but I had a whole series of breathing tests including volume, pressure, etc., and all of it was normal, even though if I walked a short distance I couldn't breathe anymore. They just told me my breathing was normal, but I was out of shape and needed to exercise more. Of course I couldn't do that with what I found out was MG.

I had seen a pulmonologist in 2012 after an ER visit for trouble breathing. He did lung function tests which showed deconditioning. It was actually caused by low potassium, which my naturopath picked up!

Fast forward 4 years and sleep doctor says no sleep apnea but he refers me to pulmonologist as I get short of breath walking to next building at work. I get much more detailed testing, after being off Mestinon and then when taking it normally. I had weak expiratory muscle function but not a big enough difference to make an MG diagnosis. But I got very confused on the bike test off Mestinon. I was much smarter and able to follow instructions on Mestinon. We also discussed my asthma which he said wasn't being treated well enough with Singular. So he started me on Breo Ellipta puffer (steroid plus long acting bronchodilator). I was much better in less than a week. Still have many MG symptoms but so glad I saw the pulmonologist, a world renowned expert in COPD.
Flutebell

Thanks for the responses. I was actually impressed with the pulmonologist. My PFTS were normal but borderline normal. But the thing that puzzled the Dr was my pulse ox is low and he said it just doesn't coincide with the PFTS. Cxr was good. And he also scoped to look at my vocal cords which he also reports look good. He did order echo to rule out leaky valve and pulmonary emboli and or perfusion. With all that said he feels I am on the right path to a neuromuscular Dx. Anyone else have low pulse ox with MG?

Before worrying about a low reading on a pulse oximeter, you should have a blood gas test. There are many limitations on these including if you have anemia, are a cigarette smoker, are being exposed to carbon monoxide, have low blood pressure, have on fingernail polish or pressed on nails, have dark skin etc. The devices are quick and handy but should not be considered the final word on oxygen saturation.
We sometimes have problems with carbon dioxide levels rising above normal with MG. So if you are really worried about this, ask for the blood gas test.
If you had a chest x-ray, they should carefully examine the thymus glad size, as some MG comes from an abnormal or cancerous thymus gland. In adults, it should be almost non-existent.
A test my neurologist did regularly with me:
Single breath count test: Ask patient to count out loud after maximal inspiration. Ability to reach 50 indicates a normal respiratory function. Single breath count of less than 15 indicates a dangerous low forced vital capacity (FVC). I think my worst was about 25 after my initial hospitilization for breathing problems.
Good Luck Russ

Thanks Russ... I have experienced the single breathe test lowest being 10 actually during an appt with the neurologist and my highest being in the 40s. I do recover with rest. I asked for a CT of chest the only Dr willing to do this is the pulmonologist if the echo is clear. I am currently trying to get into john Hopkins. It's very fruatruating to me that it takes months between each appt or test with the neurologists!!! Maybe I just haven't found the right one yet. Thanks for information on the blood gases too!!

I also decided to get a pulmonologist on board because of the frightening experiences in the hospital. The reason we get short of breath is best described as paralysis of the diaphragm due to MG. With repetition it worsens. I wanted to be established with a pulmonologist incase in the future I need intubation, at least they would know me. Oxygen saturation and lab work don't always reflect the severity of breathing or near respiratory failure in my case. The hospital staff just think I am having a panic attack.
As for what helps, my CPAP has helped at home and in the hospital. My pulmonologist did a sleep study because I notice during weak weeks I snore more and wake often. (Sleep apnea)
the CPAP help give me the strength to push air out so i use it even when im awake during weak spell. Also strangely I got a breathing treatment once while in distress and it worked allowing me to settle down and get deeper breaths.
One more thing surprisingly I learned from my pulmonologist is to avoid dairy. It contains casein which is poison to auto immune disease. It promotes more antibodies which isn't in out favor.
Wishing you all strength and hope.

Sorry for my typos..

Honeyg thanks for the info...I actually saw the pulmonologist after he suggested a baseline in case of crisis (even though I have read testing would probably be normal) and mine were low normal and showed voice box "flattening" which Dr said was def muscle weakness. So I felt a sense of peace knowing now that if I go into a crisis that at least I have a pulmonologist that is familiar with me and my case!! (A baseline). I had no idea about the dairy. I appreciate any input. And love to read others experiences. Since I'm still awaiting official Dx!! Grrr

Gonegirl3...lol@ still waiting on a dx..(hello out there I want to scream sometimes) " if it walks like a duck and the duck takes mestonin" I want to say sometimes. OK done venting.,.. I would like to hear more about the voice flattening. Was that done on a average day or weak? How was it tested? I'm curious because I have the fluctuating voice change.

Hi gone girl, I like your duck metaphor and may use it myself! Recently I've had my voice weaken and get very hoarse with use. It does get better with rest but now takes 45' instead of 20' to improve. I've made videos of it to show neuro at next visit. It is so hard not having a diagnosis. The only good side is that three neuros say I don't have MG so I'm travelling like there is no tomorrow, fingers crossed I'd be covered if I get in trouble (do have a good plan through work, for now at least).
Flutebell

@Honeyg...I did have to chuckle. The pulmonologist did PFTS and the one part of the test does test the vibrations of the vocal chords. (The Dr actually said if I hadn't mentioned hoarseness,raspy or breathy voice he would have questioned me about my voice) due to the flattening that showed. The test was actually done at 815am so symptoms at there least.
I find it funny u say your voice changes fluctuate...all my symptoms seem to fluctuate. I'm sorry u have similar symptom. But it's nice to know someone relates!!

Flutebell...I had neuro tell me voice could just be a fluke and maybe go away or maybe dysphonia. Well when I saw pulmonologist and he saw the flattening on PFT he did a endoscopy on my chords to verify no polyps or any issues...his results were negative for vocal chord issues and confirmed muscle weakness around the vocal chords. Pulmonologist feels I am on the right path by seeing a neurologist but also feels I should seek a new one