I have just recently been diagnosed after presenting at A and E with heavy pressure on my chest like I was going to have a heart attack
Ecg was fine but o2 levels were low
Several weeks previous a girl who sits opposite me in the civil service in a call centre commented "do you you know by the end of the day your right eye is nearly closed each day.I thought you were having a stroke."
I checked it on the internet as ptosis of the eye a sign of of possible myasthenia gravis.
I had to go any way as an annual check to my opticions who immediately noticed the ptosis as I entered the room.
She gave me a letter for the gp
The Gp would have on the following tuesday following my entry to hospital on the friday night diagnosed mg from the blood tests.
The neuro saw me over the weekend and started me low dose prednisolone building to mgs a day by the time I left hospital after two weeks.
I have bone and stomach protection medicine to take with it .
With this I also was was started on mestinon 60mg every 8 hrs .
Before I left hospital I was doing some walking in the main hospital corridor and found the same heavness again.
Just last night I was late with the mestinon and the chest preesure returned and my throat felt as if it was closing until the mestinon kicked in after twenty minutes and cleared it completely after an hour .
I guess my diaphram is my weak muscle in this case

Ok, I'm the first to respond -- there are many others in here who know MUCH more than I do -- but, here goes. Sounds like you started out with Occular, but have progressed to some Bulbar -- maybe even Generalized. The choking, chest pressure (breathing) is Bulbar -- THE most dangerous kind -- the kind that puts us into CRISIS -- into the hospital under a ventilator. You must learn to "listen to your body" -- be VERY, VERY careful. SOME of us (and you may be one) can literally be FINE one minute, and near death the next. NOT trying to scare you -- just want to make sure that you don't leave this Earth before you are supposed to!

Mestinon should probably be taken every FOUR hours -- not every eight (check the dosage schedule on an internet site). It doesn't LAST 8 hours.

I'm fairly new to this group -- but, it is a GREAT bunch -- really NICE people -- SMART as WHIPS!!! WELCOME to the GROUP!!

Hi, Welcome,and so sorry about your diagnosis. Jana is right on point, listen to your body. Check the dosage on the Mestinon. Also, when you feel like your throat closing up, you really should go to the hospital asap. Better safe than sorry. At the very least, call your neuro.
What dose of Prednisone do they have you on, and have they started you on any other meds? Many MG'ers are on a cocktail of meds, and that cocktail can take a couple years to figure out which combination will work best for your body.
My breathing tanks quick, and I can tell you that throat closing up feeling is a red flag to call your neuro, or go to ER.
I hate to sound like your Mom, but please during this period of learning all this, and figuring out your symptoms and all, rest rest rest. Don't over do anything, and watch what chemicals you may inhale, like cleaning items, comet is awful for me.
Hot showers are also troublesome. Anything that would normally make a healthy person pant, or breathe heavily, can be very dangerous for us.
Again, like Jana said, I'm not trying to scare you, just trying to educate, and give you all the warning signs.
On a Personal note, folding and putting away clothes causes me to breath terribly, so I get help with that.
Do you live alone, or are you married?
I'm sure many others will be along to help you.
Oh, one last thing, You can take too much Mestinon too. Read up on all the signs of too much Mestinon, it can be very much like your symptoms getting worse. It's tricky, but you'll figure each thing out. And we'll be here helping you through each step.
Much Love and prayers
Lizzie

I checked again today the throat tickle starts aroung four hours fifteen minutes .
After taking mestinon recovery starts in about 20 minutes and is fully recovered within an hour .
Because I was not sleeping in hospital at night I rarely got even with a sleeping tablet more than four hours sleep.
Now feeling I cannot afford to be asleep now more than four hours .
I am going to GP open surgery first thing in the morning.
At four hours fifteen today while I was doing my one task for the day in local store at the cafe tickle started and I could not speak properly to the assistant .recovery as above .

Put the Mestinon under your tongue and let it "melt" -- it will work faster. I usually do NOT have to take a Mestinon in the middle of the night -- you can get "timespan" -- but, it can cause problems for some MGers.

My doc put me on prednisone Fall 2008. Although I am not a stranger to it, since I have asthma, it was definitely a pain to get used to.

First it was the rapid heart beats, then the night sweats, then the appetite urges, then here comes the weight.

I was sleeping erratically because every time I laid down I couldn't go to sleep because my heart beating would wake me up, and trust me when I say this was aggravating because I can sleep through a hurricane. Then once I finally went to sleep I was sweating so bad my sheets would stick to me. So I learned to take my pill when I woke up so by night the pounding would stop and to ALWAYS have a fan on.

The next thing I knew I had an appetite that would put a pregnant woman to shame. I would wake up in the middle of the night wanting a hot fudge sundae or a third helping of dinner. Before I knew it I was gaining 3 to 5 pounds a week. I went from 185 to 225 in about 4 months. I got to the point where I had to take hoodia to curb my appetite.

Even though it has been about 8 months since I have been off of Prednisone and I still have another 10lbs to lose.

As far as the medical benefit, i did not see any difference so I tapered myself off the drug which seemed very long and agonizing. NOTE: If you just stop taking it cold turkey, it is not only dangerous, but the withdrawal symptoms are VERY unbearable.

Hope this helps!

Stephanie