I think it would be good to get a blood gas closer to the time you wake up and before you have your mestinon. Also an overnight oximetry would be good to compare to the oxygen level in the blood gas. You may be having low oxygen and high CO2 at night.

I am not sure if you have had a sleep study. I use a BIPAP auto SV but last year we had to dial in a back up rate for me as I was not triggering breathing enough and this can result in higher CO2 and lower oxygen. The machine gently prods me to breathe if I don't take a breathe in a certain window of time. BIPAP to me is a godsend and I sleep so well with it.

Co2 monitors are relatively expensive.

http://www.venturemedical.com/products/patient_monitors_and_accessories/patient_monitors/?gclid=CM-44_TK674CFQhqfgodRG0Akg

I think they are warranted in special circumstances but for most of us once a doctor knows we have higher CO2 they can work on a remedy. In your case I think seeing a good sleep doctor/pulmonologist would be a good move afteryour primary first evaluates what is going on.Your primary may do a holter monitor and an oximeter to get an idea of what is happening at night.

I hope you get a clearer picture soon and a solution. Please let us know what happens next.

Hugs, Marie

Thanks, Marie. I was having fasting blood for calcium taken the last time and had it done on the way to work so had taken the Mestinon, which certainly helps my breathing. This time I'll take it after the bloodwork.

I remember how painful the arterial blood gases were last time I was in the ER but I was probably a bit dehyrated with diarrhea from GI issues so hopefully it won't hurt so much this time.

I also have to find out if my local hospital will do the special MuSK test that our government won't approve. The hospital won't usually let people have blood drawn for out of town docs. The local "MG expert" saw me years ago and said I didn't have MG and said I should "see someone as it must be stressful to have a calcium disorder no one can diagnose" and who refused to EMGs for my family doc last summer. Trying to access appropriate health care is sure a challenge!

Flutebell

I am sorry your arterial blood gas hurt last time. Hopefully this time it will not. . The last time I had mine drawn I actually did not feel a thing. Will hope yours goes better this time.

My musk test was negative. Often if you get a good response to mestinon you probably do not have the musk antibodies. It is believed they still have not discovered all the antibodies for MG. There are a few other conditions that can look similar to MG that are

I am noticing you are on a low dose of mestinon. If your problem is weak breathing from muscle weakness that responds well to mestinon you might have a lack of coverage at night. I take the timespan at 7 pm and 7 am along with 60 mg of shorter acting mestinon. I also take 60 mg at 2 pm and extra if I am active. I use a pill cutter to cut it down to 30 mg if I add in more.

I know well how hard it is to find someone who understands muscle weakness and who will treat when testing is negative but symptoms are positive and reaction to pyridostigmine is positive. I hope you are able to access someone who is helpful.

Hugs and hang in there, Marie

Try to keep well hydrated, to plump up blood vessels, it might help with an arterial blood draw. (For an arterial blood-draw: they do need a larger bore needle, but it's not bad.)

Arterial blood-gas draws, were done on me, when I was having great difficulty with breathing. (So that was an easy confirmation, CO2 was very high.)

When your past measurements, were always right around the threshhold? Might the same general tips, that are useful, in prepping for EMG testing? Might they also work - with a blood-gas draw? I don't know. (Example: keep off Mestinon, as long as is safe for you. And, maybe? Mild to moderate exercise, before the draw?) Something to think about, maybe. Always - within your own comfort level. (Try very hard - not to take Mestinon, in the few hours before the draw. Again, within your comfort level.)

It's true, it seems the arterial blood-gas tests - are thought of as more accurate. My arterial tests - only confirmed the readings of these newer meters, that can read both O2 and CO2. Once that was seen, there were no more arterial draws.

Good luck! Keep us posted.

I visited my family doctor yesterday. We talked about my confusion in the mornings and racing heart and worsening palpitations, which improve as the day goes on.

He is running basic electrolytes and TSH for thyroid issues and referring me to a sleep clinic. So no arterial blood gases he says, until we get the sleep report back.

I am his only MG patient so I told him the basics (from bweeds' post) about diaphragm fatigue and had him put "try BiPap first before intubation" on my file as a first try if I go into crisis and end up in hospital. He is one of my Medic Alert contacts and MG Neuro is two hours away.

So overall a good visit with some doctor education thrown in!
Flutebell