Kate,
Are you on Pred too or just Mestinon? I have the same problem with my eyelid drooping!!!
Thanks,
kendra

Sue thanks for this.
Kendra

PMCPMC,
I have definitely noticed the eye and muscle twitching and thought that it might be related to taking too much. After all the response I am convinced I am taking too much and need a smaller dose on a regular schedule.
I was not aware of the damage that could be caused by Mestinon only!!! That is very scary!!! I have no doubt I get much better relief of symptoms from my Pred than the Mest.

Maurice,
I am so sorry to hearthat you have relapsed. This disease is a royal pain in the rear huh? Thanks for your input and hoping you will see improvement soon.
Kendra

If it twitches a little exercise whatever yours is uses it up anf=d the twitches stop as tere is no more available for use to cause twitch

Kendra, Please do not change anything until you speak to your neuro first! I'm glad he's an MG expert, though that doesn't mean he knows what it is like to have this disease!

I don't want you to have either kind of crisis, myasthenic or cholinergic!!!

Patrick, May I ask where you are getting your info about Mestinon, specifically what you are saying about "synthetic sodium ion replacement?"

Mestinon was shown to do damage to people with normal amounts of acetylcholine (as in the Gulf War when they took it to ward off Sarin gas).

MG can indeed cause damage to the neuromuscular junction. Newer studies show that Mestinon may indeed be a immune modulating drug, suppressing antibodies. Time will tell.

Annie

Annie,

My doctor agrees with your statement. He told me that Mestinon prevents damage to the neuromuscular junction due to MG. That without Mestinon, MG symptoms usually, but not always, progress due to this damage. He stressed to me that it was important to find the right Mestinon dose that minimizes weakness. This was when I was first diagnosed with MG and I had forgotten about it. Thanks for the reminder, I am going to look up more info about this.

Does anyone have other info about this? I would like to learn more about what Mestinon does.

So mestinon can cause damage to the NJ or prevents it? My neuro. said something similar to what yours did, Desert. He said that without treatment, MG usually progresses, and it gets more and more difficult to get to the starting point the longer you wait to get treatment.

Wow, Annie, I didn't know that. You're such a wealth of information! Any studies out on that yet you could point me to?

Maybe that explains why I decline for several days after I stop Mestinon. I hope I never have to do that again. I love, love, love mestinon!!!

Thanks!

And to Kendra: I'll get twitches all over if I go above 60, but I definitely feel the need to take 60 every 4 hours or else it's the old crash and droop.

Ally

Let me clarify all that! There are two issues I brought up.

1. When people with normal amounts of acetylcholine, in other words those without MG, took Mestinon, they did have some destruction at the NMJ. But the Gulf War situation is far more complex than that. They had exposure to pesticides which made the situation worse (because they do the same thing Mestinon does but in a more severe way and they destroy the NMJ).

http://www.gulflink.osd.mil/library/randrep/pb_paper/

2. There simply are not enough studies on how Mestinon affects the humoral immune system (which produces antibodies). Here are the only ones I know of, only one specifically addresses the suppression of the immune system by Mestinon.


http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=3

http://www.ncbi.nlm.nih.gov/pubmed/7...m&ordinalpos=4

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=2


The government has done extensive studies on Mestinon, probably more than mainstream medical professionals, due to how they use it and why. It was not Mestinon alone but a combination of factors that they believe caused Gulf War Syndrome, so don't read more into it than there is! It's a complicated issue, again, involving pesticides, Sarin gas, etc.

I hope this answers your questions. Mestinon works, that's the good part.

Annie

Wow so much interesting information.

Annie I was told by my Neuro to take my meds exactly how prescribed except for the Mestinon. He said playing with the dosage wouldn't do any damage except and I would get a better idea of where I need to be dosagewise.

I took 40 mg of Pred at 8:00 am, 60 mg of Mestinon at 11:00am and 60 at 5:00pm and haven't had any of the usual extreme weakness today. I am so happy!!! Tomorrow may be a different story since I won't have the Pred. I'm hopeful though. Thanks again to all of you for your input. You are THE best!!!!
Kendra