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

Hi, Well I guess an adminstrator removed the link from my signature. I saw it there an hour ago. Anyway, I will try to email it to you.

Weird... now the link seems to be back. But I will email it anyway in case.

Lindie, do you mind my asking what your symptoms are? I have tested negative for antibodies, and my SFEMG was only mildly abnormal. My presentation is also "atypical" (my main symptom is weakness in my sides and back so it's hard to hold my upper body upright). My neuro lets me take the Mestinon, but doesn't really think I have MG.

Here's my experience: please take it with a grain of salt, because I don't quite know what it means. The doctor told me to go off the Mestinon for 12 hours before my SFEMG. Wanting to take no chances, I went off it for three days. Now I wish I'd gone off it for three weeks before, and here's why: after three days off the Mestinon, I didn't feel any worse, so I decided it wasn't helping and stayed off it for a month. During the first two weeks off it, I kept feeling muscle twitches (which I get when I take the drug). They got steadily more rare until they went away altogether. Then, after a month, I started the drug again and the twitches came back.

This makes me think that although Mestinon has a short half-life, and leaves your blood quickly, there is some after-effect that continues. If I have another SFEMG, I'm going off the stuff for three weeks before, just to make sure.

Then again, I'm not severe enough, nor does the drug help enough, that I worry about having a crisis without it. There are people on this list who shouldn't take a risk like that. I'm honestly not sure if the Mestinon helps me or not.

I sure hope you can get a diagnosis! I am in the same boat--my neuro doesn't mind keeping me on the Mestinon, but otherwise he's given up on finding out what's wrong with me, and he's the MG/neuromuscular disease specialist in my whole area.

Abby

I'm not really sure why you guys are wanting to know all this technical information that, honestly, doesn't have a lot to do with the diagnosis or treatment of MG. Here you go anyway.

http://toxsci.oxfordjournals.org/con...2/288.abstract

http://www.mayoclinicproceedings.com...1/10/1303.full

http://www.ncbi.nlm.nih.gov/pubmed/1647337

http://www.nature.com/nm/journal/v2/...1296-1382.html

This last one refers to a study done on MICE and not on people. And what the Armed Forces got in Iraq was 30 mg. at a time for a total of 90 mg. a day, unless they were exposed to Sarin gas. If someone has a normal amount of acetylcholine in their body, they will experience symptoms of too much acetylcholine, such as the ones listed on Valeant's website.

"The most common side effects of MESTINON® include nausea, vomiting, diarrhea, abdominal cramps, increased salivation,tearing and increased bronchial secretions. Additional side effects of MESTINON® are muscle twitching, muscle cramps and weakness."

http://mestinon.com/index.jspf

Do you mind saying what exactly are your concerns or questions? I'm not really sure why you guys are so concerned about this. Thanks.

Abby, Dr. Howard found that the effects of Mestinon can last anywhere from 2 days to two weeks, even though the drug "clears" the body in a matter of hours.

Annie

Yeah I'd hate to see someone who can't get a prescription anymore but knows it helps plenty.

Wow about the 2 weeks thing... interesting.

I keep forgetting and not taking it.

Annie, well for one thing, I don't like walking around with only trashcan diagnoses. People think I am crazy trying to explain how I can't do things because of my weakness and fatigue, but that doctors haven't diagnosed me with anything. Trashcan diagnoses also lead to other docs not wanting to take anything seriously. The diagnosis is like hypochondria (why does this girl insist that her muscles won't function well enough when we have a perfectly good test right here proving that it's fine?) and laziness about exercise. If I could state that I have MG that would make more sense. I am accustomed to dealing with the trashcan diagnoses but that is just one aspect. I would be interested in getting a thymectomy if I would help, and trying other treatments. Also there is doubt in my own mind about what I have, and I would like to be more aware of what is or isn't happening. And why. Because if it's not MG then I want to know what it is.

Wondergirl, Believe me, I totally understand not being taken seriously. I had MG my entire life and didn't know it, was pooh-poohed in 2000 by an "expert" after I discovered that I had ptosis, had that expert blacklist me when I was diagnosed with MG ten months later by another expert to keep himself from a lawsuit (no, I never even mentioned doing that) and even had one of his neuro pals keep a positive antibody test from me.

Some diseases are very hard to diagnose. I personally do not believe MG is one of them if a doctor is knowledgeable, open-minded and does a thorough job of a clinical exam and a differential diagnosis (ruling other causes of weakness out). MG is not a trash can diagnosis, though. Because of the strong drugs involved, most doctors will not give a diagnosis or treatment until they are sure. Some doctors will throw around other diseases or conditions like anxiety, depression, fibromyalgia, etc. before they have thoroughly evaluated a patient. To me, that is the definition of a "trash can" diagnosis.

What you can do is to see more than one doctor. You can see a pulmonologist if you have breathing issues to evaluate if there is chest wall muscle involvement. You can see a neuro-ophthalmologist to evaluate any ptosis or double vision. You can seek out the second opinion of an MG expert neurologist.

I know that not knowing what is going wrong with your body sucks. And many doctors do not do everything they can to get to the bottom of what is going on. They often throw their hands, and their patients, in the air and give up.

What you can do is to stick to the facts of what is going on with your body. Write a journal of ALL symptoms. Take photos of your face. Do some research that may reflect those symptoms.

Most people here know that I cannot stand what some patients have to go through on their way to a diagnosis. Seven years for a woman and one year for a man, as an average time to diagnosis, sort of says it all. What that tells me is that there is some disconnect in their theories about muscle fatiguing and the difference between men and women. Well, that and the fact that many doctors are sexist.

Mestinon has been found to possibly do damage to the neuromuscular junction in normal people if taken for an extended period of time. So you would want to know for sure if you have MG or not before you take it for a long time. A good doctor will know if it's working for you or not. Or they would do a Tensilon test first to see how an obviously weak muscle like ptosis would respond to it before they start you on Mestinon. And they would follow up with you to see how the Mestinon is working.

You don't want an MG drug if you don't have MG. I know you also need one if you do have it. It's not fun getting diagnosed. Try to concentrate on your situation and not on "what ifs," if you can. You may make yourself nuts by trying to "prove" something to a doctor. It's probably better to find a good doctor who will be thorough and listen. I hope you get the answers you need soon.

Annie

Personally I think I am okay with not knowing. I don't feel like spending more time, money, and energy getting a diagnosis. I might mention it to one more doc every year or so, but just offhand. Just too tiring to deal with their reactions and questions. I am still interested in reading and discussing with others online sometimes, especially to share the info I do have with others. I would like to form my own hypotheses and opinions, and I simply find certain physiology and science interesting.

Well, you may not be okay with not knowing if you do have MG and end up in a myasthenic crisis! There are doctors out there who are kind and who won't completely stress you out. You have the right to know what is going on.