That's what my neuro says. On last visit, she said only someone with MG could tolerate the doses of Mestinon I take daily. So she's confident it's MG but has nothing test-wise to prove it! (which bothers her not at all!!)

I'm also one of those who received a "positive" diagnosis based on response to Mestinon - all of the other tests were within a normal range.

The most important thing that I have found over the years is to trust your instincts - that's true of everything, not just MG. The thing with MG is that the symptoms can be so subtle that people on the outside looking in just can't "see" what we do. We know what "normal" for us is, but a doctor who is only seeing us at a particular moment in time can only make a judgment based on what their eyes - and test results - tell them.

As far as the hospitals go, we have to remember that only about 600 people a year get diagnosed with MG in this country - that's an average of 12 people PER STATE (obviously there are more diagnosed in states with larger populations, but you get my point).

What I'm trying to say is that MG is not something that most doctors see. For most people - especially those whose case is caught early - the diagnosis is one of elimination. Doctors rule out all of the "usual suspects" first - they are told in medical school that most cases are "horses", not zebras (there are very few exotic cases).

I had one doctor tell me, "Be happy - you really don't want to have MG" - well.....duh.

But if that's what I had, I sure as heck wanted to know; once we have a name, we can start being pro-active. If we don't have a name for what is bothering us - and yet we KNOW that something isn't right - then we start to think that we are either going crazy or we are a hypochondriac.

Keep being persistent. In the meantime, take it easy - as you have already discovered, overdoing it will land you in the hospital, unable to breathe. If you find yourself short of breath, go to the ER, tell them that you are in the process of being evaluated for MG, and insist that they have mechanical ventilation close by. If possible, take a friend or family member with you who can monitor you closely - if your lung muscles stop working, seconds literally count.

And bear in mind that an ER deals with "emergent" situations - their job is to stabilize patients until they can be seen by a regular physician for longer term care. All of the "unnecessary" tests that they do are more CYA than anything else - if things go south, they have to be able to show that they ran all of the "right" tests.

If you do get admitted and you don't like the doctor who has been assigned to you, then INSIST on a different doctor. Most hospitals just arbitrarily assign one to a patient; you have the right to change doctors if you aren't happy with the one that you got. If you know a good neurologist in the area, ask if they can be your doctor. If you have a regular doctor, ask them for a recommendation - they know who the "good" ones are (my regular M.D. has ALWAYS referred me to great specialists, and I have called her office before for hospital reco's, too).

With the age of the Internet, we have more resources than ever at our disposal - doctors see hundreds of patients in the course of a year for a few minutes apiece. We "see" ONE patient 24/7 - who do you think knows more about what happens day-to-day? Find a doctor who is willing to listen to you and work WITH you to get the best possible outcome.

And as you have already discovered, this forum is a fantastic resource - since there are so few people who actually have this disease, it is nice to be able to talk to others who have been there, done that.....

Oh, one more thing - you mentioned that you have Hashimoto's. Have you ever been tested for Celiac Disease?

Many people with Hashimoto's have an undiagnosed case of CD (or they may be gluten-sensitive). A gluten-free diet is the simple "cure" for CD/GI, and many people find that a lot of other problems that they had been experiencing are either greatly alleviated or disappear completely.

While a GF diet will NOT cure MG, it can sometimes help with other health issues that a person may be having. Even if you don't test positive for CD, you may want to do a one-month trial of a GF diet, just to see if it makes you feel better (you do, however, have to eliminate ALL gluten for that month - there is no such thing as "gluten lite").

You might also want to find the list of medications which are contra-indicated in people with MG - even if you haven't yet been diagnosed with it, if you DO have it, those medications can cause real issues (some of them life-threatening). Better to play it safe....

Mestinon will only help you if you have MG and otherwise do nothing other than possibly make you sick. Too much can mimic the symptoms of MG. For me it gives me gastro problems if I take too much at once but it definitely helps with my MG. It was given to Gulf War troops and below is a quote from wikipedia:

Pyridostigmine bromide has been FDA approved for military use during combat situations as an agent to be given prior to exposure to the nerve agent Soman in order to increase survival.

Apparently some of the troops did not have good reactions to taking this med as it is a possible cause or issue with Gulf War Syndrome. Interesting stuff on wiki...

Thank god I found this group otherwise I would be a useless body laying in bed feeling like crap and thinking I was crazy!!!!

So yesterday i had emg, he only did test on right hand and stuck needle in right arm no testing on legs dspite my repeated statements that most serious problems are in my legs. No surprise EMG was negative. Also dr wouldn't do sfemg despite my request. I too was told by doctor that negative was good news and I also responded maybe you think good new but I don't necessarily since I still don't know what is wrong with me.

It was ONLY because of what I had learned from this group (thank you thank you thank you) that I knew about mestonin and I insisted they start me on it because discharging me and telling me to lay around and do nothing was not acceptable. So I came home last night with rx for 60 mg once per day, they wouldn't give me pill made me come home get script filled.

I took one yesterday and I think it made me feel better. I got up this morning feeling really crappy (probably because after telling me I could go home yesterday they then made me wait around about 5 hours which was only 5 hours because I got very annoyed and really insisted they sign discharge and let me go) waited about 2 hours to see if I started feeling better with no pill but
didn't really so i took pill about 1 hour ago and magic, I do feel better.

I will make followup appointment with neuro dr at um - not the guy I dislike but the dr who is in charge of neuromuscular group at um.

Sounds like you have your answer....now to get a doctor to concur.

One pill of mestinon a day will not be adequate. How many tablets did you receive?

When you make your appt, tell the receptionist that you are "just out of the hospital" due to severe weakness/breathing difficulty. That may or may not help.

FWIW, it took me 4 doctors to find "the one." It takes persistence, but once you're "in" you're in!

Hang in there...and be careful!

Ooh...1 60 mg Mestinon a day? Time to find another doctor in my humble opinion. Mestinon for me typically wears off at 4 hours; I take 30 mg about 4 times a day. And if you take too much, it can make your symptoms worse. Might I suggest taking 30 mg at least twice a day instead of 60 all at once?

I take 60 mg four times a day.

I take 30 mg anywhere from 4 - 6 times a day depending on how I feel (and activity level and the temperature, etc.)

It should never be used like no-dose (as an example). By that I mean don't just keep taking it because you want to keep going. Too much can put you in as bad a place as none. Find a good neuro you can work with and adjust the dosage with time and experience.

Be aware that if you are taking Mestinon, it will invalidate the results of any sfEMG or EMG. You need to be mestinon free for anywhere from 48 hours to one week before testing. (The length of time is varies depending upon who you talk to - but I think all neuros accept 48 hours as the minimum.) Check this out with your neuro well ahead of appointment.

The first thing that a doctor wants to do when seeing if Mestinon will "work" for a patient is to determine what DOSAGE they can tolerate.

My neuro gave me an Rx with the instructions to try 30 mg once a day for 3 days. If I could tolerate that, then move on to 60 mg once a day for 3 days, then 90 mg for 3 days, then 120 mg for 3 days.

If at any point during this trial a dosage made me feel bad, I was to go back to the dosage that didn't make me sick. Mestinon's effects wear off within 4-6 hours, so it's usually not a "crisis" situation if you have one "trial" dose that is too much.

For me, 90 mg was the "sweet spot" - 120 mg put me on the couch, sick as a dog.

Once the dosage has been established, then the INTERVAL can be determined - that is, how often you need to take it. And with Mestinon, while too high of a dosage is a bad thing, most of us find that some days we need to take it more OFTEN then our usual interval.

Each patient is different.

And my doctor knew for sure that I "had" it when I figured out what dosage worked and started to figure out the right interval on my own (because I was functional for the first time in a long time).

Apparently I was not the first of her MG patients to do that.....

If you can tolerate 60 mg without seeing a discernible difference, you DO have MG - you might need a higher dosage, but talk with your doctor to see where to go from here.

People who do not have MG can't tolerate even the tiniest amount of Mestinon.