Hi I was diagnosed with MG in August 2006. the worst thing about the diagnosis was that there was no information other than what was on the internet, available in New Zealand.
The Doctor who told me about the condition turned his computer towards me and said this is what you have got. I had double vision and all I saw was a whole lot of lines on the screen. He gave me a scrap of paper with a website address on it. He also gave me a prescription for pyridostigmmine. His script said 2 tablets daily.
The next day I had the 2 tablets early in the morning. it was like a switch had been turned on. I was back to normal. At least for 3 -4 hrs. I contacted my doctor and it was soon discovered that the doctor in the hospital had made a mistake in writing out the script.
Once I had the correct meds life became easier.

Hi, Seamus. Welcome to MG and the forum! Do you want to go by Seamus or another name? We're pretty informal here. It's a very supportive place to be. This disease is terribly unpredictable and it helps to talk to others who have it.

There are other people in NZ with MG. I have a friend who has it who lives there. She pretty much feels the same way about docs there, unfortunately.

Since you're in the midst of summer there, you need to be careful while out in the heat. It can make your MG much worse. If you live near the coast - and who doesn't in NZ - then the humidity will make things even worse because your body can't cool down as well.

Pyridostigmine Bromide comes in both tablets and syrup. You'll find that it kicks in about 30 minutes after taking it and then wears off about 2-1/2 hours after taking it. So most people have about two good hours of it.

Sometimes it's the dose amount that needs increasing and sometimes the frequency of the dose. It's not a perfect medication but it does help with symptoms. The number one "mistake" MGers make when first on Mestinon is that they think they're all of a sudden super human! Try not to push yourself. If you do, you can get rapidly worse and end up with what's called a "myasthenic crisis" where you get much weaker and may not be able to swallow, talk, walk or breathe well. If you ever get that bad, you should dial your NZ version of 911 (for an ambulance).

I hope you have a good way to communicate with your neuro. It's so important to let them know if you are worse or have any changes in your MG. It can take awhile to get used to MG, so take it easy! Keeping a journal at first helps. It also helps to write down all doses of Mestinon so that you don't forget you took some and then accidentally get a double dose. If you get too much of it, you can have a "cholinergic crisis," where you get weak from too much acetylcholine.

If you haven't already, you can go to www.myasthenia.org for more information. Though I've gotten more from these guys than a website! They do have good information there though.

I hope you'll take it easy, give yourself time to get used to this disease and learn as much as you can.

Annie

Thank you for your reply.
My name is actually Seamus.
I Take 120mg Pyridostigmine 3 times a day. In the early stage of MG I ended up with 2 rush trips to hospital due to pushing myself too far. Each time they referred to it as an MG Crises. I spent a week in Hospital each time. In 2007 I pushed myself too far again and ended up with 2 heart attacks. I had a triple bypass and a thymectomy on New Years day 2008. (I,M a slow Learner) After a couple of months off I tried to go back to work and as a result ended up back in Hospital. Now I've slowed down and listen. to my GP. I do struggle with the summer heat. I saw my Neuro in Dec Last. He is talking about increasing my meds as I am having problems with my mobility

Seamus, I think that just about ALL of us are "slow learners". I don't think I've ever met an MGer who wasn't a "Type A" (hyper, work-aholic, superman/woman).

Thank you for your reply

Hi Seamus - - welcome!!