Mestinon effects on healthy people?
 

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.

Annie,

With taking 90mg every three hours, what happens overnight? Does a timespan get you through till morning?

Mick

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 AnnieB3,

I'm new to this site and would love to know where you are getting this information. I am taking 30mg Mestinon 3 times a day. It significantly improves my weakness, but not enough, I know that I need a higher dose. The problem is that I haven't been officially diagnosed with MG. I have a SFEMG at the end of the month. If it is negative, they will no longer allow me to have Mestinon--despite the fact that it significantly helps and I have had no side effects thus far. The doctor's rationale is that if I don't have MG then I don't need mestinon. According to these doctors, a significant response to mestinon isn't enough to give an MG diagnosis as even a healthy person will have strength improvement when taking mestinon.

If you can tell me the source(s) of your information I would be very grateful.

Sincerely,
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

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. :( :mad:

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.

Hi Everyone!

Let me apologize in advance. This is going to be a long post. No laughing :) , but I just figured out that there was more than one page to this post, so I’ve been missing out on a lot! So, wondergirl & AnnieB3, I finally see your links! LOL.

---Stellatum
I will send you a PM (I think that means Personal Message) regarding my symptoms and we can exchange stories. Fortunately, you are still allowed to take the mestinon. I was told not to take mestinon for 2 days prior to my SFEMG, but I have stopped taking it now. My SFEMG is not until Sept 29th. I will only take it if I start to have severe breathing problems. I want to make sure that it is all out of my system before the SFEMG.

I worry that your getting muscles twitches while on the mestinon. This does not happen to me. Have you discussed this with your neuro?

In my case, I think the mestinon helps significantly and I do worry about going off it for breathing reasons, but I’m willing to chance it. I don’t want to have any reason that the SFEMG might give a false-negative.

I’ve been doing a lot of research on neuromuscular problems. Send me a list of your symptoms and how they started, etc… And I will see if they ring any bells. No promises, but it couldn’t hurt.

Prayers for diagnoses for both of us! Best wishes, Lindie.

--AnnieB3
I want to know mestinon’s effect on healthy people because I want to understand the neuro’s rationale for taking me off the mestinon if my SFEMG is negative. In my opinion, the mestinon SIGNIFICANTLY increases my strength. He has NEVER seen its effects on me. If my SFEMG is negative, I think he is going to try and say that there is nothing wrong with me (i.e. I’m a “healthy” individual). I was hoping to find data that mestinon would not increase strength in a healthy individual or would have a deleterious effect.

Unfortunately, thus far, that does not seem to be the case. It appears that a deleterious effect can occur only if too much mestinon is ingested. However, 30mg 3 times a day, does not appear to be too much and can apparently improve the strength in a healthy individual. This does not help my case. Right now I am only being allowed 30mg 3 times a day. Thus, he could argue, if my SFEMG is negative, that the improved strength I get from mestinon is not significant or is caused by the placebo effect.

Who is Dr. Howard?

--Wondergirl and AnnieB3
Okay, now I want to get in on the “trashcan” diagnosis subject. MG is definitely not a trash can diagnosis. The problem is that people like wondergirl and me who are struggling to find out what is wrong with us do often get trashcan diagnoses, such as fibromyalagia, anxiety, depression, conversion disorder, chronic fatigue syndrome, etc… Not because these diagnoses are "trash" in any way, but because they are given without thorough investigation into your ailment. These diagnoses are often given when a doctor doesn't know what is wrong with you and has thrown his hands up.

Unfortunately, once you are pigeon-holed with one of these diagnoses, especially, if it is psychiatric based diagnosis, no doctor takes you seriously or will truly investigate your symptoms.

I think this is where a lot of wondergirl’s frustration comes from and so does mine. I KNOW that there is something wrong with me and I know it is NOT one of these trashcan diagnoses. I want a doctor to stop feeding me trashcan diagnoses and do the job that I am paying him for—finding out what is truly wrong with me. I can handle whatever it might be, but I need to know. I can’t fight something if I don’t know what it is. Without a definitive diagnosis there is no real treatment and without real treatment I continue to suffer.

I agree with AnnieB3 that MG should not be a difficult disease to diagnose, but it is. In part this is because every MG patient is different and unfortunately, doctors have a recipe for MG and if you don’t fit every category in the recipe they will withhold diagnosis. Also, a lot of doctors, especially neuros (I’ve found anyway), think they are Gods and know everything. Very few of them do the job we’ve hired them to do—investigate our illness. They go off of their own knowledge and if everything about your disorder is not in their knowledge base, well, they wash their hands of you. Additionally, very few actually listen to their patients and are detailed or thorough in their analyses. To make matters worse, unfortunately, we live in an age where diagnostics are all the rage. Without a diagnostic test that confirms the ailment, doctors will deny diagnosis. In my opinion this is a problem because doctors are more and more relying on tests, which can be fallible, to tell them what their brains should be telling them. Don't get me wrong. I do think diagnostic tests are very important, but they are not the be all and end all of medicine. There comes a point when a doctor needs to stop looking for diagnostic confirmation and start looking at a patient clinically. Doctors need to think and brainstorm about what is going on with their patients instead of waiting for some test to give them the answer. If it walks like a duck, quacks like a duck, and looks like a duck, then you shouldn't need a special test to tell you that it is a duck. Granted a test could confirm to you that it is in fact a duck, but what if the test comes back negative? Would you actually look at the duck and say, well, the test to confirm that your a duck as come back negative, so I don't think I can definitively say that your a duck. Come on docs, start using your brains!

As far as I’m concerned, the DOCTORS, make getting a diagnosis more difficult than it should. As a patient, this is beyond frustrating.

AnnieB3’s suggestions about keeping a log of ALL your symptoms, taking photos of your face, and doing research are all great suggestions. I do all of them. Unfortunately, my experience so far is that the doctors don’t want to see your symptom list or your photos. Nor do they care about YOUR research. YOU are a nobody, THEY are the doctors. Perhaps, I’ve just had bad luck with doctors, but I’d really like to know when my luck will change because it’s been 13 years!!!

AnnieB3’s suggestion to see other doctors such as a plumonogist and a neuro-opthalmologist is also a good suggestion, one that I am in the process of doing. However, thus far, I have found that what the other doctors have written about you in their reports will follow you, even if you see doctors in different fields. It’s medical bureaucracy.

I am NOT okay with not knowing what is wrong with me. But I don’t focus on the “what if's”. I focus on what is true for me. I don’t think anyone should try to “prove” that they have a particular ailment, what if you are pigeon holing yourself? What if you are wrong? Right now I would like a GOOD doctor, who listens to me, looks at my symptoms list, looks at my pictures, isn’t an arrogant know it all, who is thorough investigator, etc… because that is the only kind of doctor that is going to be able to figure out what is going on with me. The problem is that I don’t think this kind of doctor truly exists. I’ve only been looking for him/her since 1997.

BTW, ending up in a myasthenic crisis seems to be what has worked to get some people an MG diagnosis. I must have the worst of all luck because it didn’t work for me. I’ve been hospitalized twice for breathing problems that match an MG crisis and would have been hospitalized at least 2 more times if I hadn’t taken 60mg of Mestinon (without my doctor’s permission) when the breathing problems hit again. Despite the fact that my records clearly state that twice all of my stats (heart rate, O2, etc…) dropped drastically low during my first breathing crisis (they said that this happened when I “fell asleep”, but I do wonder if my diaphragm simply gave out) and that mestinon significantly relieved my symptoms (both breathing & weakness in other parts of my body)----I am still being denied an MG diagnosis.

Can you tell that I’ve simply had it with the medical system?

Sorry to be so negative everyone. Apparently I had a lot to get off my chest.

Sincerely,
Lindie

Kinda tired so brain is fuzzy now, but overall I agree. I don't know which trashcan diagnoses you got. In my case two of mine are Fibromyalgia and CFS, and I believe I do have those. But for some reason I feel like my Fibro was secondary to the MG or MG-like thing that I have. Just my hypothesis. I am willing to accept that I do not have MG. But that instead I have some viral thing that causes muscle weakness and resembles MG in ways. And I think that made me very prone to developing Fibro. I don't want to give personal details here but there's a research study that makes me think this viral/MG-like stuff.

I said most of this in previous posts on this forum but I guess it's ok to repeat. I wish I could remember or find the webpage again. I believe there was this article by a MG specialist where he encouraged docs to diagnose you with MG if you responded to a trial of Mestinon. Despite all other tests being negative.

I feel my case is more mild. I mean I don't think a doc would see drooping and stuff.

Also for me the Mestinon helps with so much more than what you'd think of as "muscle strength". Helps me formulate sentences without having this weird halting/pausing that my brain does on me, helps my speaking not feel tiring, and gets rid of this terrible inaction feeling I have. I think my brain needs that extra Ach. I read that Mestinon is not supposed to cross the brain barrier much except in times of high stress, I am usually in high stress mode and think it crosses mine and helps a lot. I feel I get a dual effect therefore, the brain one and the muscle one. And I think the muscles not feeling all weak also makes my brain act differently and not go "wait a minute, don't try to move now because you're so weak... maybe later".

I'm sure there are some good MG specialists out there. Who would diagnose based on all that evidence. Did you try any that specialized in MG? I don't have nearly so much evidence.

I did get diagnosed with autonomic dysfunction which may help you a little bit. But that's a semi-trashcan diagnosis. Mine is, anyway, because my doc who diagnosed it did not figure out what type of dysfunction so it's like a "not otherwise specified" / unknown version. I personally think mine is a trashcan diagnosis anyway because I think it's only due to my Fibro/CFS/MG-like stuff going on that my autonomic system acts a bit funny sometimes.

Anyway before I forget, um, if you have $$$ and time and can travel, there's a doc you might consider seeing about MG or other diagnosis (PM me if so). Anyway back on the other topic, for autoimmune types of autonomic dysfunction, Mestinon often helps. So I consider it some kind of autoimmune thing I have. Someday I would like to get a NCV and EMG and EEG again, I believe my other results were wrong.

On this other topic of twitches, I wonder if MG people are more prone to them? I got twitches as a med side effect, major ones, and think it's easy for me to get mild ones from seemingly-innocent supplements or meds.

[QUOTE=wondergirl;691687]I'm sure there are some good MG specialists out there. Who would diagnose based on all that evidence. Did you try any that specialized in MG? I don't have nearly so much evidence.

I did get diagnosed with autonomic dysfunction which may help you a little bit.

Wondergirl, I don't know all your details but in researching my own issues while waiting for a diagnosis I see over and over that autonomic dysfunction is a hallmark of Lambert Eaton myasthenic syndrome, especially dry mouth, impaired sweating, and postural hypotension. LEMS is another autoimmune disease of the neuromuscular junction, even less well-known than MG. It affects release of acetylcholine rather than uptake. The results are much the same as with MG.

I easily get symptoms of Mestinon overdose and can only imagine that these symptoms are what normal people would get from taking Mestinon. All of the symptoms I get are listed as side effects for Mestinon except for one symptom (increased heart rate).

When I take too much Mestinon (or don't eat/drink with the Mestinon), this is what I feel (even if I take only 15 mg):
-Nervous
-Twitching
-Increased heart rate
-Diarrhea

If I continue to take the same doseage of Mestinon I get worse symptoms such as:
-Sore muscles
-Stiff muscles (one time it was so bad I could not bend my arms or legs)
-Sweating
-Mouth watering
-Double vision
-Heart pounding even when resting
-Nervous to the point that I feel afraid of people
-Stuttering

I can not imagine wanting to take Mestinon if I did not have MG. I hate the side effects and don't think it can make a normal person stronger - I think they would instead get sore and stiff muscles (and other side effects) which would make them weaker. Of course, that is my opinion, but I strongly feel that you will know if you are taking too much Mestinon. I don't think any of the side effects of Mestinon are pleasant or helpful.

I know how much Mestinon helps me and I feel angry at your doctor for not listening to you, especially when he has no other diagnosis or solution. To withhold Mestinon from me would feel like a death sentence, because without it I am basically bedridden and unable to chew food or function at all. Maybe your MG isn't as bad as mine, but still I relate to your situation and feel angry.

I hope my list of side effect is helpful.

Thanks DesertFlower,

I haven't have any of those side effects while taking my 30mg of Mestinon. I've only taken 60mg of Mestinon once to divert a breathing crisis, but I didn't have any side effects from it either. Yes, the possibility of a doctor taking away my mestinon does in fact feel like a death sentence. That's a great way to put it. It will condemn me to a life in bed or on the couch. Even worse, it may actually kill me as I've been having breathing problems and some severe choking issues. It seems that no one wants to take the responsibility of giving me a diagnosis based on clinical symptoms, but who takes the responsibility if I die because they refused to treat me clinically?

Thanks for your support!

Thank you for mentioning LEMS, that might fit me better than MG. I know I looked at that condition before, but ruled it out as unlikely for some reason. Maybe because it usually does not start in childhood, but I need to keep LEMS in mind. That's a great example of why a diagnosis would help some patients: LEMS has at least one medication that is used for it, which is NOT used for MG. I'm not sure if I'm understanding right, it seems to say if you have LEMS you have cancerous cells floating around your body? Even if you don't have a tumor. Cancer does run in my family but obviously I hope I don't have anything of that nature in me.

Same here, I hate the side effects. It makes me really hesitate to take the Mestinon. I wish I would just take it more but to me it's sort of trading one problem for another. I do feel life would be much worse without the option to take it sometimes.

I hate that sometimes the Mestinon is a lot less effective for me. Those are often the times I am wanting it to work the most. This might be an indicator that I don't have MG? I believe some other people with MG agreed about this part? It doesn't work as well when I'm somehow in an extra tired out state. Though in this state maybe I should take a higher dose, but I've been afraid of side effects.

Wondergirl, if I am tired from too much activity, Mestinon is not as effective. I have to be careful not to overexert myself. Mestinon does not make me "normal" and for me it is also usually when I most want to do something that the Mestinon is not enough to prevent the MG symptoms and I have to rest. If I don't rest when I need to the MG symptoms get much worse. Mestinon really just takes away the worst of the MG symptoms. It is very frustrating...I am sort of learning to live with it, to know when to rest, to do my best to pick the activities that I want to do and say no to everything else.

Same for me. (As I mentioned, I do have CFS/ME which new research says is due to a virus called XMRV. And Fibro.) I used to think it was due to Fibro, but now think that's minor and I think I can tell the difference. I don't know if it's true but I wonder if the Mestinon not helping is when my body runs out of Ach supplies to send to the muscles? I would like to try supplements that help Ach production and provide building blocks.

If I sit or lay in some odd positions, they are actually easier on my body. Because certain muscles of mine are not as weak apparently. But normal day to day activity is hard on my muscles. Just sitting in a chair or laying down in some positions.

I think when I'm not on Mestinon, my body is releasing adrenaline just to so it can do anything, and it helps for the immediate needs but that probably makes me weaker in the long run. I guess we discussed this part already. Mestinon makes me not have to do the adrenaline pushing and crashing which feels icky and unhealthy.

60% of LEMS cases are "paraneoplastic", meaning there is a cancer,usually small cell cancer of the lung. If someone at high risk for lung cancer is diagnosed with LEMS then the doctors need to do tests for lung cancer. The other 40% of cases are non-paraneoplastic, autoimmune disease.

Wondergirl, Do you take vitamin D every day? At least 800 iu's? You wouldn't believe how many times someone is diagnosed with fibromyalgia when it turns out to be a Vit. D deficiency. Sure, it can be super sensitive nerves or hormone fluctuations and lots of other reasons since they don't definitively know the cause of fibro, but it's worth trying.

Lindie, Dr. Howard is Dr. James Howard, Jr. of University of North Carolina. Super nice, super MG expert.

Okay thanks, I could be in the 40% autoimmune then.

I do have VitD deficiency or insufficiency. At one point I supplemented a lot for months and it helps, only to an extent. I am taking it again to get that improvement back. Well, I hope I can stick to it.

Were you ever tested for celiac disease?

No? I was told that most MDs think celiac is "fake". In the way that many thing "chronic fatigue syndrome" or fibro is fake.

I had an allergist do skin prick tests and it said I only had "mild" food allergies. Wheat was not one of them. However I get migraines easily from foods, and lots of other symptoms. Definitely have issues with soy, sulfites, milk, peanuts, Bromelain enzymes, berries, probably other nuts, sucralose and probably many other sweeteners including raw sugar?, probably other dairy, etc.

I did a brief unscientific elimination test (and need to test it better but have trouble doing so) for gluten and believe I would feel a less tired on a gluten-free diet. But maybe it's not the gluten and it's simply that I get bad with high glycemic foods? (I had eaten plenty of white rice when trying to eliminate other foods because I needed something to eat. Also some people told me it is very possible to be allergic to plain white rice.)

However it seems like I am allergic to everything, and I believe it has more to do with chemicals used in processing than the foods in general?

I am diagnosed ADD and I know I have at least 75% of Asperger's symptoms (which some docs wouldn't recognize since it manifests differently in adults and females) and autism spectrum disorders run in my family. I mention that because of the connection to sensitivities and gluten issues.

My mother is diagnosed with RA (I think that's always autoimmune?), Fibro (researchers think it's autoimmune) and apparently had an abnormal EMG and/or NCV but I'm not sure why it was abnormal.

First of all, Celiac Disease is not an allergy! I have seen and heard it described in that way, even in the media. It is an autoimmune disease that produces a variety of antibodies, including gliadin, endomysial, reticulin and tissue transglutaminase ones. A deficiency of IgA can make a normally positive test look negative.

There's no such thing as a "mild" food allergy! Why? Because after repeated exposure to the allergen, it can become a more severe allergy. There's no way to predict when or if that will happen. It was my allergist who, when I asked him to test for celiac, did so without even blinking. He's awesome.

White rice is on the high glycemic list. Whole grains like wheat are not. Quinoa and brown rice would make for a better gluten free trial. But getting tested while on gluten is the best thing to do so you know for sure if you have celiac disease or not.

RA is an autoimmune disease. So is polymyositis. Does she have those test results of the EMG?! RA does NOT cause a positive EMG.

If I were you, I would find a GOOD allergist, hopefully one in private practice and not at an HMO, and get retested. They usually do skin prick tests, intradermal (injection) tests and/or RAST tests (blood tests).

To me, it sounds like you have not had good doctoring. What really helps when you go to a specialist is to only mention ONE condition. Not necessarily one symptom. Often if you mention more than one thing, they automatically lump you into the "trash can" diagnosis' or as a hypochondriac.

I hope you will get retested for celiac.

Well, I was saying I have not been testd for it. I don't consider the skin prick test for wheat to be getting tested for celiac. I have a good allergist, his patients think he is wonderful and he listens and spends time with everyone, one of the few good docs honestly tries to help improve patient's lives IMO. Though he is "only" an allergist.

Yeah I was saying she has RA and other conditions including Fibro.

I don't know more about the EMG/NCV except one or both were abnormal. That's one reason I started wondering if I have an actual muscle/muscle junction issue going on and not just Fibro and CFS and looked into whether I may have DM, MD, MG, etc.

No I mostly have not had good doctoring. Most PCPs of course will only spend a few minutes and just want to refer you off to a specialist. I don't know that I have the time, money and energy to pursue it.

And certainly I will ask to get the blood tests for celiac disease. I didn't know they could possibly diagnose by just blood tests, very cool. Good timing since I am planning to see a new allergist, or if I see a new PCP I can ask. (Love the other one but want one closer and will probably keep seeing the other one too.)

I guess it's totally possible for me to have celiac but for my sister not to? And it's possible for some celiacs to have less problems? Like, sometimes if I eat a bunch of bread (and meat), say I don't notice any negative effects. But maybe I still have it?

I don't understand why people like brown rice, I dislike the taste. And I'm one who likes the taste of barley grass shakes and a lot of healthy stuff most people couldn't stand. I do want to get myself used to eating brown rice. (Maybe quinoa too but the first time I tried it, I did not feel like I could get used to it, and felt maybe it was bad for me.) Just had some and my body expected to get the dip in energy that I get with white rice, but it was absent! (And thanks for pointing out that I should not alter my diet before the celiac tests, I will just have brown rice a couple more times.)

And on the LEMS note, I do get the bladder weakness/urgency issue, so annoying.

I also get a shortness of breath and labored breathing thing happening when I have hot foods. It's bothersome and of course it feels like I can't walk around or do much since I'm already "out of breath" and feel like just resting. Maybe lightheaded.