It's a feeling I hope I never have to experience in my lifetime again, it was like someone was pinching my nose and had his hand over my mouth and you gasp for air...some other times I felt like I ran a marathon and just couldn't catch my breath, at work just sitting at my desk I'd get those deep breath gaspings like when you have a deep cry...I couldn't drink without CHOCKING! and then gasping for air.

Then soon after I started having severe swallowing difficulty it would take me 1/2 hour to eat a hamburger and kept worsening afterwards, It got to a point that I couldn't drink nor eat solids, jello and yogurt and thickened liquids became my diet for about a month and I soon started losing weight and just kept getting weaker

This didn't happen overnight, that's when I started seeing my GP and thought I had Cardio problems, I also had heart palpitations and upset stomach a lot.

Please don't wait till it gets to this point, now that I know what a CRISIS is ACT IMMEDIATELY and consult with your neuro.

Don't be scared, I was but now feel better I ever had, breathing, eating, swallowing all have improved from before hand it just creeps up on you so slowly you don't notice it until it's to late, my vision has improved too my Optometrist asked me what I had done, she was amazed on how it had improved after being under medication.

Good Luck and don't be afraid about getting help, just don't let go we're all with you! Once you're under medication it'll be for you to adjust to your new lifestyle and capabilities I have and don't regret it, I feel much better, I'm back to work 5 days a week 30 ish hours, back to walking and biking and a bunch of other things. I'm still improving as time goes by...

Thanks a lot for this Snoel, and Annie. It is great to find a forum like this filled with wonderful people. For my breathing problem, i feel like my chest really tense, want to throw up. Eveytime i put my hand on the chest, i feel better. Even when i sleep laying down flat, it feels a lot better with my hand pushing my chest.

I just check my heart beat rate. And it is 109. Wonder if MG's breathing problem make the heart rate faster?

When the body cannot get enough oxygen, the heart works harder to make that happen. Therefore, the heart rate goes up. When the heart cannot accomplish that anymore, the O2 plummets. And a MG patient gets far worse.

You need to take this seriously. No one likes to go to an ER, but you need to. If you are rapidly becoming worse, it is the ONLY place you should be. Please. Don't become a statistic.

:hug:
Annie

I just saw my nero for the first time. She ordered a CT scan and Pulmonary test. She said that i can go to the dentist for extraction and exercise. Would i listen to her or have a second opition. She only answered when i asked the question about MG. A little disappointed. She started me on mestinon 60mg 3 time a day, every 8 hours! Wouldn't it supposed to be every 4 hours?

They often start slowly for a reason (well, a couple of reasons). They don't want anyone to overdose in case they got the diagnosis wrong AND they want to see if a patient has any side effects or adverse reactions to Mestinin before they adjust the dose amount or the time between doses.

So that's what a good neuro would do! Of course, it would have helped if she had discussed how you might adjust the spacing in a week or two.

Mestinon wears off in 3 hours. It kicks in after about 30 minutes of taking it, lasts for two hours after that, and then wears off in the last 30 minutes of that 3 hour period of time. That does not mean that you should take it that often or even take it every 2 hours!!!! Don't play with it yet. That's how people end up in a cholinergic crisis (too much Mestinon/acetylcholine). A myasthenic crisis is when there isn't enough acetylcholine getting to the muscles.

I'd put off the exercise! What kind do you do? This is the point where some doctors do not understand MG. Yes, it's great to be able to keep muscles as strong as possible. But the more we do, the worse we get (relatively).

I hope they do the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) tests. Those are specific to neuromuscular diseases. They show how well we are doing at breathing air in and out.

Be cautious at the dentist. Make sure you sleep well a couple of days before and a couple of days afterward. Stay well hydrated. That will help clear any drugs from your body. Since they put the drugs into the mouth, try not to talk too much over that period of time to reduce the strain on those muscles. Sometimes, the "caines" (i.e., Novacaine) can affect breathing as well.

Keep asking questions! There is a lot to know about MG.

:hug:
Annie

Annie can correct me if I'm wrong, but when you go to your dentist, be sure to tell them that you are taking Mestinon and you are being treated for MG. A good dentist should take that into account and be able to make treatment decisions that will help you get through the appointment better, and also pick medications that will work better for you during the appointment. If you need to take a break to rest your jaw, for instance, let the dentist know. If you know you have weakness in your face, tongue, and jaw, tell the dentist in advance so that they will know to let you rest periodically. They can work that out. Sometimes it helps to close your mouth for a bit, and get a break from holding it open the whole time.

Take care,
Erin

PS It is a good practice to bring a list of current medications to your dentist appointment, too.

Annie,
For my situation, is taking 60 mg mestinon at a time too much? Can i just break it half and taking it every four hours instead?
For the exersise thing, i asked her if i can go to the gym. She said "yes, why not" it seems like she does not expertly know much about MG.

Yes, Erin, that's correct. But even if they take everything into account, that doesn't mean that a MGer won't have a reaction to what is done.

I have an awful time after an eye appt., when they give numbing drugs and Atropine (which does the opposite of Mestinon).

So many ways we can become worse!

You can start out with 30 mg. if you so choose. But I would not take it more often right away, not until you know how you are doing on it. I am not a doctor and only a neuro can make recommendations. If you have questions, call them up!

Exercise is fine if someone with MG isn't new to it or is stable/sufficiently treated. Mestinon is only a "helper" drug and does nothing for the underlying autoimmune antibody attack.

MG is also a "supply and demand" situation. Mestinon does provide more "muscle gas." But if someone does too much, it can be like drinking water. The effect is diminished with increasing activity (or heat or stress, etc.).

In other words, the more one does, the more acetylcholine is needed.

Take it one day at a time and see how things go! ;)

Annie

Thanks, Annie
May i ask what kind of medication are u on?