Wondering if anyone has good links, articles, info on this. Side effects and benefits for someone who didn't have MG. I'm thinking someone who doesn't have AChr problems would not feel any better from it, or would they feel a bit stronger too? In the past I read posts from many people who said Mestinon just didn't help them in any way.

Also long term bad effects of it? All I know is the stuff on wikipedia about them giving Mestinon to help protect soliders from nerve gases and stuff, and them thinking Mestinon may have caused them long term and/or permanent problems.

I am too tired to search right now. I will try to look it up later if nobody knows.

In particular, I keep seeing reference to this article, and I'd like to read the whole article somwhere. "Breyer-Pfaff U, Maier U, Brinkmann AM, Schumm F. Pyridostigmine kinetics in healthy subjects and patients with myasthenia gravis"

Hi Wondergirl,

I dont know where I read it but it would probably be under gulf war stuff. I know the USA gave its soldiers mestinon to protect them against nerve gas etc. I can remember reading that they suffered side effects of sickness, runny bottoms, excessive salivation. Mestinon overdose can also cause problems breathing.

This was always my argument with my GP, if a healthy person took the amount of mestinon I was taking they would be very ill. I suffered very little side effects.

Plus mestinon is used to increase the blood pressure in people who have low blood pressure on standing. I certainly notice my BP is normal when on mestinon and stupidly low when I am not on it.

Hope this helps
Rach

I do not think Mestinon would have adverse effect on patient without MG. It is also used, outside MG, to improve bowel transit and in France, you may have it for that purpose without prescription.
Also, as far as Gulf war side effects are concerned, I think the dose given to GI's was around 30 mg/day which is ridiculously low for us, MG'ers and also during a much shorter time...
Maurice.

I developed high blood pressure after starting Mestinon, now I takes meds for high blood pressure.

Wondergirl, I was overwhelmed with the number of posts you had recently and wasn't sure where to start. First of all, welcome. Do you have an informal name?

If a person with a normal amount of acetylcholine takes a low dose, like 30 mg., of Mestinon, they would experience side effects of the drug. Their muscles may or may not get weaker. Any higher than that and people will have signs of a cholinergic crisis. Some people even have signs of an overdose at 30 mg. In the long run, if someone does not have MG, Mestinon will not do anything for them.

The Gulf War Syndrome is complicated and not really an important topic for someone with MG! Just ignore that information, unless it's a topic which interests you. There were many other things involved, such as pesticide exposure, vaccinations, Sarin gas exposure, etc.

Muscle strength effects blood pressure. When I am weaker and off of Mestinon, my BP is higher. Once Mestinon kicks in, it is normal.

Are you actually diagnosed with MG? I haven't read all your posts yet so I don't know.

Mestinon is not a benign drug or you could get it on any shelf in a drug store. Maybe doctors should drink 90 mg. of it and see what happens if they think it's like candy or drinking juice (Mestinon syrup). They would fall to the floor, drooling and unable to move or breathe well.

I think it's more important that you have a solid diagnosis and then try to figure out all the information you need to have when you have MG. I hope you can get good doctoring - maybe try to find an MG expert.

Annie

I would like to be diagnosed, if I have MG... I might not, but I think it fits very well. I had a neuro who said some people abuse Mestinon. Maybe he was just making that up?! Doesn't seem like a fun drug. Maybe soliders found out they could take extra and it was the only thing they had? I am curious because I heard others say that if Mestinon works for your muscles, then you have MG, period. But maybe it helps me because of a different autoimmune problem.

WG, It depends upon what the neuro meant by "abusing" Mestinon. Do they take too much without speaking to their neuro? Take it too soon? None of us can "abuse" it without a prescription and that is the responsibility of a neuro. Sounds like a lot of passing the buck to me.

I have absolutely no side effects of Mestinon and am on 90 mg. every three hours. For me, it is a great drug. Others have bad GI side effects. When used appropriately, it is a good drug.

Have you tried writing down your symptoms and when you have them? You may begin to notice a pattern. Have you taken photos of your face, like in the morning and then after activity or towards the end of the day? Have you seen a neuro-ophthalmologist to assess your eyelids, vision, etc? Do you have any breathing issues? If so, have you been to a pulmonologist to assess that?

It helps to start with symptoms, classify and clarify them and then go to a doctor with it all delineated and written down. Sometimes it takes going to more than one doctor to get answers. Do you have a primary doctor who can talk to you about possibilities?

I hope you can find answers to what is going on.

Hi there,

I was looking up information on the effects of Mestinon in healthy individuals on the web and came across this post. So, I joined NeuroTalk just a few seconds ago.

I'm hoping that you have found more information on this subject. If so, please let me know what you have found. Right now the doctors are allowing me only a low-dose of Mestinon, 30mg 3 times a day. It has been significant for me, but I know that I need a higher dosage. The doctors are refusing. I just saw a "specialist" last week who is willing to do a SFEMG, but says that if it is negative that he will take away the Mestinon--despite the fact that it is significantly helping me.

His argument is that even healthy individuals feel stronger with Mestinon so if MG can't be proved then there is no reason for me to have mestinon.

I'm trying to figure out if he is just feeding me BS.

Anything you know would be helpful.

Thank you,
Lindie

Hi. I would not do the SFEMG and risk losing Mestinon if I were in your situation. Unless you have another doctor who can give it to you despite negative SFEMG. I have the same question as you still. The info I got and gave in this thread is basically all I know. Though I will PM you too since I have one other thing to share about this. It has to do with my suspicions about how much rebound effect you or I or anyone gets.

Thanks Wondergirl,

I have to do the SFEMG, it's my only hope. So far, all my other tests, AchR antibody, repetitive nerve stimulations tests, and standard EMG were all negative. Per the "specialist" this makes it "unlikely" that I have MG. Also, my presentation is not classic, so if I have MG then it is considered "atypical". The SFEMG may be the only thing that proves that I have a neuromuscular problem. Right now my whole life hinges on this SFEMG.

I'm trying to get my hands on this article--The Influence of Pyridostigmine Administration on Human Neuromuscular Functions—Studies in Healthy Human Subjects and the one that you posted. If I can get them I will forward them to you if I can figure out how. I don't yet know how to use this site.

Hey, you mentioned in an email that you put up some links to article in your signature. What exactly is that and how do I get access to it?

Sincerely,
Lindie