Right now I take 90 mg of mestinon 4 times a day and 180 at 10 pm before bed. If i have a bad day, I take 120, 4 times a day and 180 at night. I had the episodes when I stop breathing at night and wake up choking and gasping for air. I have not had it again since mt last IVIG, done for breathing issues. I am going for a sleep study, the pulmonologist thinks I need a c-pap to help me breathe at night.

Are you on an immunosuppresant? I take cellcept and have found a general improvement in my MG.

Try going to a neuromuscular specialist at a large teaching hospital. They generally treat more aggressively and with more than just mestinon.

hope you feel better
kathie

Hi Kathie - No, I am not on an immunosuppresant. She wanted to put me back on a low dose of prednisone for 1 month 10mg every other day. I told her the Endocrinologist said no prednisone unless I am in the hospital hooked to an IV and it is for life saving purposes. (I think I am pretty close to that right now)

I know there are other options if I am to be placed on an immunosuppresant right? I guess I am a bit confused. I thought if you had your thymus removed that put you in the category as having your immune system suppressed? So why would you need to take more drugs to do that? I wish I felt better when I see her and we weren't always dealing with so many things. She spends an hour sometimes longer and I still do not have these basic questions answered.

My understanding about thymus removal is that it has nothing to do with suppressing your immune system. I was puzzled about why removing the thymus didn't automatically stop our bodies from producing the T cells that are causing the problems in the muscle/nerve juncture and send us into remission. She explained it (very simplistically) to me as follows: for some currently unknown reason, our bodies decide the receptors on the muscles are foreign bodies and must be destroyed; so it wakes up our thymus gland and tells it to work on some T cells (which our bodies create all the time and use for many useful things) to destroy the muscle receptors. The thymus is like a school that educates the T cells to do this particular job and attack the muscle receptors. When our thymus is removed, our body says "Hmm, well I have these particular T cells and I must need them since they are running around in my body, so it continues to manufacture that particular T cell along with all the others it produces."

Of course it can't be that simple, because this is mg we are talking about. For some people, it does put the body into remission. For some, it doesn't seem to make any difference at all and for some there is a kind of middle ground where you get some benefit, but not remission.

Hope this helps a little with understanding why removing the thymus doesn't really have anything to do with our having immune system suppressed. That is a separate issue and most of us with mg have to be on long term immune suppression. For most of us, that means Cellcept or Imuran. There are others, but these two seem to have the most benefit with the lowest amount of side affects for most people.

A lot of us are also on IVIG to support our bodies and of course you have to throw prednisone into the mix, but that is usually started at fairly high doses when we are in crisis and it takes a long time to wean ourselves off of it.

Hope this helps give you little better understanding of a small portion of mg.

Good luck and hope you find what works for you.