Thread: Burst of Energy
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Old 12-05-2012, 10:33 PM
uncledave uncledave is offline
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Join Date: Jul 2012
Posts: 62
10 yr Member
uncledave uncledave is offline
Junior Member
 
Join Date: Jul 2012
Posts: 62
10 yr Member
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Quote:
Originally Posted by AnnieB3 View Post
Hi, uncledave. Do you like to be called Dave?

I assume you're talking about a 60 mg. Mestinon tablet. Not only does MG have a big learning curve, Mestinon does too. Sometimes more is not better.

There are two things you can change: The dose amount and the dose frequency. It's always best to check in with your neuro before you make any changes.

120 mg., or 2 tablets, is probably too much. Why? You run the risk of flooding your neuromuscular junction with too much acetylcholine. There are many studies on keeping dosing of Mestinon no greater than 100 mg. Yes, there are exceptions to this but most neurologist do not like to dose above that because you could wind up with a cholinergic crisis (too much acetylcholine). An MG crisis is when you don't have enough acetylcholine and are much weaker.

Sometimes having a consistent dose of Mestinon throughout the day works better. Like 60 - 90 mg. every 3 - 4 hours. But, again, talk to your neuro.

I apologize if this sounds too childlike but I think it's important to really understand what this disease and Mestinon does.

You know how when you drop something on the floor and then have to clean it up? That's what is going on in the neuromuscular junction. Acetylcholine/ACh (ah-seat-ill-co-lean) is the muscle gas that keeps our muscles strong. Acetylcholinesterase/AChE (ah-seat-ill-co-lean-es-ter-aze) is the enzyme that comes in to clean up the ACh mess. That process happens in everyone's body, whether they have MG or not.

So, because we have MG and not enough acetylcholine gets to our muscles due to the damaged muscle receptors, Mestinon BLOCKS that AChE/enzyme from doing it's job of cleaning ACh/muscle gas up so that we can use it longer.

The problem is that when you block too much of the enzyme, too much muscle gas can build up. That happens if you take too much Mestinon. So you can get weaker on too much and get into trouble. You can also have more side effects, like Quandry was talking about with the sweating.

I attached the Mestinon pdf below for you.

I'm glad you felt better. It's such a hard balance between not enough and too much with Mestinon. And, sometimes, if you do more activities, you might need a little more Mestinon. I can take 10 mg. more if I'm going out, for example. I'm already on a high end dose.

Everyone is different and what works for you might not work for someone else. I hope you can figure out the right balance.

Annie
Hi Annie! Yes, I like being called Dave or Uncle Dave either one. Thanks for replying.

My neuro told me of the effects of too much but also told me that 2 tablets probably wouldn't hurt. I see on the literature you sent me that the average dosage is 10 60mg tablets per day. The day I am talking about I only took 6 in total. I am being very careful so as not to bring on a crisis. I have not repeated this dosage either. I will wait until I see my neuro. On the other hand, the next time I go shopping I will probably take two again just before I start. I felt like a million dollars. I haven't had that kind of energy in 30 years.
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