[janell]

I have had MG for almost 5 years and I have taken Melatonin almost all of that time. It has not affected my meds at all. I would not worry for a minute about taking up to 10-15mgs. nightly. Both of my doctors tell me it is not going to interfere with any meds.
Actually, I am not certain why a neurologist has not placed you on an ASV already. I sleep on a home ventilator every night and never wake up once I go to sleep.I never had a sleep test and a good neurologist should know that.
Medicare approves two types for MG, an Astral or a Trilogy. They will not approve a Cpap for AM patients.
You should ask your Neurologist. You do need a Blood Gas, which is just a blood draw but it does have to come from an artery which is just a tad more pain than a regular one.
You should not suffer unnecessarily when a lot can be fixed. Hang in there.

[janell]

I find it very interesting this site would not post my reply because it disagreed with everything written in the column.  Apparently, this is just for people who are willing to “fall in line” and “comply”.  As I stated in my original reply, arrogance.  I thought we were free to express our thoughts, I am obviously incorrect.

I have now lost faith in this site altogether.

[janell]

I have been on CellCept for four years and it has made my life much more normal.  That’s all I take and I am now on a maintenance dose of 500mg twice a day.

I have ONE Rituxin infusion in February 2018 and immediately weaned off Prednisone and Mestinon since then just CellCept. Just my experience.

[janell]

That’s nice and I thank you.  However, I do not feel you owe me an apology at all.

I have had this disease over four years and after my initial few months I had a deadly crisis and spent a few weeks in the ICU and hospital.  I am one of the lucky ones though, I have been on CellCept only for four years and my life is close to normal.  I do tire more easily but then, I am old.  I use a heated mattress pad at night that helps to ease any muscle pain I may left over from the day.  I really do not fit in with most of the people on this site and I rarely even read it, this particular article just caught my eye.

My Neurologist (who happens to be a world renowned), tells me I am his Gold Star patient because my attitude is, I will not bow to this disease, I will not allow this Covid “thing” to change me, change my life, change my interaction with others or the world.  His opinion is that attitude and demeanor are half the battle.  I give all the praise to him and to God, my life is in his hands and I do my best to be representative of that faith.

In my opinion, we are all responsible for ourselves and others are just as entitled to their opinions as I am and it is nothing but judgmental to fault others for an opinion different from our own.  The world owes us nothing, it is up to us to make our own way and be personally responsible for our own actions without expecting others to “bow” to our way of thinking.

That’s why I found the article arrogant and condesending but again, that’s my life rule, it does not have to be yours.

Best wishes, may you be blessed in your MG journey and be as lucky as I consider myself.

[janell]

Thomas, You do you and I will do me, I am no parrot, neither am I “hopped up on steroids” or being put in a freezer.  I am entitled to an opinion that may differ from you and I am entitled to express that opinion with admonishment from someone just because mine is different.  Thanks for your comment, save the sugar for yourself, I find it bad for my weight.