So far, nothing as not diagnosed. I started a new thread. I will ask for mestinon though if diagnosed. Thanks for the advise!

Thank you very much for the information. My Neuro advised me to go on prednizone just this past Thursday. He kept advising me that my Mestinon is not lasting very long, I'm taking 11/2 that only last for about 3 hrs or less. So, he said I am better off taking prednizone on top of that. I had my doubts. So I told him, I'll think about it. Over the weekend, I was experimenting with my mestinon and went up to 2 every 4 hrs. It worked, aside from a little bit of stomach cramp. I was so happy, I called him and told him of the result. He said that he still recommends the pred as taking too much Mestinon is toxic. He said that I have to stay in the hospital for 3 days to be monitored. When I told him that I can't just take off work just like that, he offered to do it as outpatient. I'm supposed to call him this Friday to see how the 2 tablets are working. I'm pretty sure, he will again suggest the prednizone. After reading what you guys went through. I know what I am going to tell him. I am forever grateful to you all!

Does anybody have positive experience on herbal meds or acupuncture treatment?

I've never heard of too much mestinon as being 'toxic'. I take 60mg q 2 hrs (waking hrs) and that's because I'm in a relapse right now, well, the last 4 yrs. Before that, I was on 60mg q 5-6 hrs. I started on prednisone in 2001 but only because I was having breathing problems. I desperately want to get off the stuff. CellCept didn't do the trick for me and now I'm hoping that I'm a candidate for the immune reboot procedure at Johns Hopkins. I'd suggest to your neuro about trying CellCept or Imuran before going prednisone.

Jennifer in Ontario

I've been taking Mestinon for years, and have never heard of it being toxic. Pehaps he was refering to the fact that one CAN overdose on Mestinon. the only real drawback I've noticed to mestinon is that over time your body can become adjusted to it, so that you need to up the dosage to get the same effect. I've found that coming off the Mestinon for a time, perhaps several days, lets you sort of re-set everything. Of course, with my relatively mild MG, I'm able to tolerate a couple of days without Mesty, where someone else probably couldn't.

I talked to my Neuro on Monday, and he still suggest taking prednisone. He's saying that it's better to take a small dosage now than wait until I become worse. My real problem right now is my speech, which does not really bother me that much, just annoying at times. People I talk to understand me fine, I rarely have to repeat myself when I talk to them, just very nasal. I'm torn and I would really appreciate any feeback. I don't want to take it because of the possible complications/side effects. On the other hand, would it be better to find out now how I will react to it, than wait till I don't respond to mestinon anymore then find out that prednisone doesn't work? I have one week to decide.

Help!

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.