My neuro says no oxygen. It's not good for MGers.

When I got kidney stones after my MG diagnosis, they really exacerbated the MG. The pain and anxiety just made the MG worse. So be careful. Even though hot baths are bad for MG, that is sometimes a successful treatment for the kidney stones, and is how I rode out my last bout, with a brief hot bath and plenty of advil. ~Joe

Some people would tell me oxygen was ok and people who knew MG were most concerned about CO2.
Apparently the mg problems cause co2 problems and that was my problem.

Thanks, everyone! I talked to hubby about what he teaches in physiology and he gave me the simplified version. It seems that adding oxygen to a body with too much CO2 stops the body from breathing enough. Something about the triggers for respiration being suppressed by the supplemental oxygen.

I already wake up gasping for air when the heart senses low O2/ high CO2 so I think I'll see if I can get the CPAP/BiPAP trial first. If that helps we'll know that hypoventilation is the cause.

Joe, I use Magic Bags (rice heated in microwave) for my kidney stone pains. I've been known to have one on the front, another on the back and even sitting on a small one, like I was hatching an egg for the pains there! I noticed that when I was walking from the car to the ER I was having trouble with my tongue. I took Mestinon, assuming I'd forgotten my early dose with the night of pain. Within 30 minutes I was able to explain my problems to the triage nurse without sounding drunk at 8:30am on a Monday morning!
Flutebell

Paroxysmal nocturnal dyspnea? That is the name of a heart problem with symptoms you describe.

Good Luck

Thanks, Rhanson. Just did some Googling - a dangerous thing! I had a full cardiac workup last year due to palpitations and all looks good. So maybe it is just high CO2 as it only happens after about 5 hours of sleep and when my O2 has been low for a short time.
Flutebell

I am encouraged by the fact your doctor is willing to do some experiments to see how you respond. That shows a respect for your individual physiology. This may be a time when a consult between sleep doctor and a specialist in myasthenia gravis is needed.

In people with chronic high co2 the body no longer responds to the high co2 to increase respiratory rate. It relies instead on the need for oxygen so that is why when someone with chronic COPD is given oxygen caution is used. Sometimes a high level of oxygen will wipe out the bodies ventilatory drive.

That said you sound as if you breathe ok during the day and that you do not have chronically high levels of CO2. I am unsure how high your CO2 levels go at night but there are ways to measure them although it is not commenly done

I found two articles that talk about oxygen and mysasthenia gravis.
One says there is a correlation between advancing age and this problem. The other talks about the fact that BIPAP sometimes fixes the problem and in certain cases oxygen.

http://www.ncbi.nlm.nih.gov/pubmed/9012216
http://www.ncbi.nlm.nih.gov/pubmed/16243623

I think it is important to realize there can be difference between us, as in all snowflakes, and sometimes one thing applies to one of us that does not to others.

Before I was diagnosed with a neural junction disorder, and before I was on mestinon iI require oxygen 24 hours a day for a solid year.
I want to point out I am 68 right now and was in my 60's at the time.
Once on mestinon I was weaned off oxygen. I did fine for quite a while. Then I devleoped apnea and needed BIPAP. Later I developed a problem called glossopharengyal hypertrophy that cut off my breathing even on the BIPAP at night and sometimes in the day. I once again required oxygen but just at night until I got the proper surgery. Then I had problems with increased muscle fatigue and often found with fatigue in the afternoon my oxygen saturation dropped. I could put on oxygen at this time or BIPAP. AT night I used BIPAP alone. So you can see how complicated things can get.

There have been times in the hospital where medications stripped the acetylcholine from me so fast I needed BIPAP until emergency mestinon kicked in. I could have been given neostygmine as well if someone competent to administer that was available. I have found at those times when I am working hard to breathe for the 45 minutes it takes for my body to get the additional mestinon I do better with supplemental oxygen bled into my BIPAP.

That is me. I do not have COPD or anything that causes chronic CO2 retention.

I hope this is helpful. We are complicated patients and there are often no easy answers that apply to all of us in all situations.

Hugs, Marie

Thanks, Marie. I have seen the first abstract and wished I spoke German! I hadn't seen the second one so will look it up tomorrow when wired into the University library network so I can read the whole paper.

My family doc and sleep doc are in my town, the MG specialist is two hours away. At least I don't have to travel as far as you do for appointments.

My experiments have shown several nights with just a 3% drop in oxygen with or without bedtime mestinon. But it was strange that the only nights I went below 88% was on mestinon nights after the meds would have worn off. I do feel better on the days following mestinon at bedtime.

My recent CO2 is not really high (32 with a range of 21-29. Yet I do have confusion and mild headaches when waking up. I am a very sensitive person so am not surprised that I feel just a slightly elevated level. I've had low phosphate for years and I've read phosphate is used as a buffer for high CO2. I think my family doc should sit down with all the data (like my naturopath does!) and figure out what is breathing related and what is kidney related. But we often have so many things wrong with us that the answer is obscured. Might be time for more pulmonary function tests. The great doc who talked to me after my last set in 2012 was the one that said I needed a referral to a "neuromuscular expert, not just a regular neurologist" - I have him to thank for my life!
Hugs
Flutebell