AnnieB3, yes I have a really great pulmo thankfully. He was the one who said you need a really good neuromuscle person after he saw the results of my pulmonary stress test in Feb of 08. But my internist wanted to have me yet see a cardiac doc again for the minimum at least. This was my third go round with a cardiac doc since 2004. That was who I was first sent to about the breathing prob with chest aching and weakness. But my heart is always fine. I have all the tests possible.

My pulmo doc is the head of the pulm lab and one of only 2 docs I have ever had that will listen and admit they would like to do some research. He did this when I said I wondered is my Sjogrens was affecting my breathing. I just miss the initial response I had from the mestinon. It fixed my breathing in such a major way. Over the last 2 years I developed an intolerance to it. I can only take smaller amounts now. My frustration comes out in this regard. I still have a kernel of hope tho that I will have that better breathing again one day. 95% is certainly fine per se but I was working harder to breath that day and I just wish it showed up more clearly. My pulmo said he has some new ideas about how to test me when I come in to see the new neuro Nov 2.

Annie59

Annie,

I am glad that you are getting a second opinion, and I would not hesitate to get a third/fourth or even fifth one if needed.

over the years of my illness, and through encounters with patients in the real world and in cyberspace, I gradually realized that neuromsucular respiratory medicine is one of the blackest holes of medicine. I can't understand how this came about, but it's a reality we have to live with (and hopefully correct).

With me they eventually went from not giving me any respiratory support to giving me two respirators (one for back up , after they realized that if I don't have a functioning respirator with me, I could actually die).

when they last checked my respirator memory, they told me that I "only" had one hour over the last week in which I could not breath at all on my own (they could see that I could not even trigger the respirator, which means near-paralysis of the respiratory muscles ). I do not want to think what would have happened if I did not have my respirator with me during that one hour.

From my experience, very few pulmonologists (including very good ones) understand the importance of NIV. In retrospect, there is no doubt in my mind that I should have been given a Biapap long before and not only after I nearly died, or started having episodes of acute respiratory failure that could no longer be ignored (by pulmonologists).

Not that it made much of a difference for the neurologist in charge of my care at that time, who still thought I was not breathing to the extent that my vital capacity could no longer be measured, because I was afraid to go home (or some other idiotic explanations of that sort), but like I said, I try as much as I possibly can, not to put my care in the hands of those people any more (although, unfortuately, you can't always know what they really think, until it is put to some test. they can appear to be completely normal reasonable people until you realize that there is no doubt in their mind that the world is flat and there is nothing you or any one can do to make them change their mind).

Breathing is a very essential activity of life. It's very hard to do anything if you can't breath properly. it's true that it doesn't endager your life immadiately, as if you are relatively young and healthy you have good reserves to keep some reasonable gas exchange going on, even if you have servere weakness of your respiratory muscles. Even you vital capacity may be preserved and be normal or near-normal if you have good and compliant lungs.

But, then all your efforts will be put into this one very essential activity- breathing. you will not be able to do much other then that. you will fight and work hard for every breath, like a person drowning in the ocean, part of the time hoping that you will be able to keep on doing it and save you life and part of the time hoping that this agony will end.

And many physicians will (very wrongly) think that it is not possible to maintain such gas exchange with significant respiratory muscle weakness.
and also (as I have recently found out) patient with myasthenia may have abnormally low baseline CO2 levels due to impaired ability of their muscles to metabolize the CO2 produced in them (my baseline CO2 level for instance is 30, which explains why I start experiencing symptoms of CO2 retention with a "normal" level of 40).

none of the physicians I have met so far (pulmonologists or neuroloigsts) are interested in any of this, and when I told them about my findings and the way it may affect management of patients with MG (as their CO2 levels may appear as if they are hyperventilating and having an "anxiety" attack, when in fact they are doing very poorly) they just shrugged their shoulders and told me that CO2 levels are not important and what matters is how the patient is doing clinically.

No doubt they are right, and that's why in that one time I was convinced (by my very concerned pulmonologist) to come to the ER, and the resident there noticed I could hardly breath, they "safely" discharged me home, when they were reassured by my CO2 level of 45. (even though my bicarbonate levels clearly showed of compensated respiratory acidosis, which means that I have been having CO2 levels that were high for me, for a significant number of hours, fully correlating with how I was doing clinically).

I didn't want to tell them (as it wouldn't make any difference any how) that I sent a patient of mine to gastroenterology (where they diagnosed colon cancer) because his Hgb. was 13.0 (which is completely normal, but not for someone who has a Hgb. of 16.0 at baseline), or dehydration, when I was told on the phone that my patient's Hgb. was 12.0 (as I knew she never went over 10.0, in the six years I have been following her).

survival with this illness, unfortuately means an endless struggle with the illness itself and even more so, with those that are supposed to help.
The gap between their notion of what this illness is, and what it really is, is so large that I am not sure we will ever be able to cross it.

Alice, You may have an even bigger fight because you are a doctor. You would think the truth would be more important to them than being right. It's only controlling personalities that choose their version of what's right over what's best for a patient.

I'm so glad that you look at trends in tests too. It was the trending of my white blood cell count to almost below normal that got me thinking about a B12 deficiency back in 1998. I always look at the trends of my tests now and not the absolute numbers. Same for my dog too! He has pancreatitis and the smallest clues are the best at determining how he is doing.

The doctors during my MG crisis got it so completely wrong with me, I can't even deal with what they put me through. They even did blood gases while I was on oxygen. What they should do is teach doctors HOW to think and think creatively in med school.

It makes me so sad for what patients like you go through. Like you, I know I should've been given a Bi-Pap back in 2005. Why do they wait until things get so dire? They tout preventative medicine and yet can't quite do that for their patients. If I'm on the way to kidney failure from not breathing well at night, I think it would be more important to keep me from it than for them to prove a point.

I know of someone who was given a Bi-Pap due to "daytime sleepiness," who didn't even have hypoxia - not even close. No apnea or anything. It's unreal.

I'm sure I'll figure this out sooner or later. Thanks for your help, especially since you are so busy and often not feeling well.


Annie