You (and it seems like also your neurologist) have to come to terms with the fact that your illness just didn't read the book.
He should give you treatments that help and stop treatments that don't. Without you or him having to repeatedly question the diagnosis of your illness.
Unless, there is very clear and unequivocal evidence that it is something else.

Medicine is not an exact science and the diagnostic process should not become a Procrustean bed that leads to more harm than good.

Yes, there are anecdotal cases in which someone received treatment for an illness he/she didn't have. But, there are numerous more cases in which treatment was withheld because not all diagnostic criteria were met.

Yes, every treatment has the potential to cause harm, but this is true for patients that receive it with the right indication, just as it is true for those that receive it by mistake. In the vast majority of patients who had significant harm from treatment, it was clearly indicated.

There are mistakes in medicine, both regarding a specific patient and also systematic errors that led to wrong treatment for many years and for numerous patients. As we learn more, we realize that what we did before was wrong. But, it was right for the knowledge medicine had then. And overall modern medicine has saved much more lives than it caused damage. And we constantly aim to do better.

Life is not an insurance company. There are certain risks we always take-when we go in a car, can we know for sure that the road will be clear and no lunatic will come from the other side without any warning? when we go in a plane, can we know for sure that it is not going to crash?

It would be ridiculous to stay at home and never go out, because of the fear that we may have a car accident, but it would be as ridiculous to see a car driving in the wrong lane and ignore it, because it is against our plans that it will be there.

Physicians and patients constantly do those mistakes, because of the wrong assumption that medicine is an exact science and we can always know and plan. We don't take the road unless we know (or think we know) for sure that it is safe, and we don't move out of it, when we see someone driving in the opposite direction, because we know (or think we know) that it is impossible for him to be there.

Many cases in which serious harm was caused by commonly used medications is because this was not realized on time.
When a patient is given experimental treatment we document everything (even if he falls on a banana pill and breaks his leg) as possibly related.
When a patient is given a known medication, we tend to attribute only known side-effects to that medication.

Your clinical symptoms (in my opinion) fit myasthenia even before you had an official diagnosis. your diagnostic tests seem to support this diagnosis at least to some extent. No one has an alternative or more reasonable diagnosis. (it's always possible that this is all caused by some aliens from outer space and if you could only find their spaceship and ask them to give you the anti-dote you would be well, but I think this is much less likely than the much more boring possibility that you have plain myasthenia).

The sad thing, in my opinion, is that much more is known from research in other fields, and also from going back to the original clinical descriptions of MG by people like Friedrich Jolly (who gave it this ridiculous latin-greek hybrid name), Osserman and Mary Walker. But this data and knowledge is for some obscure reason, not assimilated into the understanding of MG.

Our understanding of the immune system has advanced tremendously over the last few decades, still it is a very complex system. We constantly learn about sub-types of cells, new roles of various proteins, new ways to modulate it. And we are really at the edge of the iceberg. There are numerous physicians and scientists around the world that are studying the immune system. There are quite a few leading journals that are dedicated to immunology or at least have a large section dedicated to it.

In fact, the first treatment for MG-ephedrine, was discovered by an MG patient who was also a physician. She received it for another indication and noticed significant improvement in her MG symptoms while taking it.

Thanks, Alice. My neurologist was refusing to treat me for myasthenia until I got the opinion from the other neurologist he sent me to, the one I traveled to see. When that doctor wrote to my regular doctor, my regular doctor set aside all doubt, and proceeded as if the case were completely settled. He never brings up any doubt now.

I have thought from the beginning that this is a sensible way to proceed. There are risks to treating me, but for goodness' sake, there are risks to not treating me, too! Very real and very severe risks. I do get that. There isn't a risk-free choice.

I also keep in mind that even if this isn't myasthenia, it's still likely to be an autoimmune disease. They run in my family. I have Graves'. Imuran could well be a reasonable treatment even if my diagnosis is wrong.

Now, all that said--you know how myasthenia usually starts at the top (eyes) and moves downward? Mine started in the trunk and moved up and down. It started in my sides, abdomen, lower back, and then moved to my thighs, neck, and upper arms. Now it's pretty much spread through my body. When I'm especially weak, I tend to choke and my fingers get weak--like it only hits the extremities when it's really bad. On a very good day, my only noticeable symptom might be a bit of stumbling as I lose my balance.

Thanks for your encouragement, Alice. It means a lot.

I spend a lot of time reading about and thinking about my disease. This isn't as unhealthy as it sounds--I am fascinated by medical things, and I love reading about them. It doesn't make me depressed. It just makes me feel less at sea.

Abby

ROFL!! May I say that this PROVES I have a memory problem?!?!?! Didn't even have an inkling we had previously discussed this.

Anywho, I really, REALLY, NOW, don't think you have it. I think you would KNOW. Think about "old lady" arms -- you know how they "hang down" and "jiggle" -- flap to and fro in the wind? Your legs would be loose like that, I'm pretty sure. NO muscle mass at all -- just mush.

You got me laughing this morning -- and the sun is shining here -- FINALLY!! Gonna be a GREAT DAY, I think!!

Alice, now YOU have me laughing even HARDER!!!

Jana, there's a nonsense poem by Lewis Carroll (it's from the Through the Looking Glass, the sequel to Alice in Wonderland) that has one line that (ironically) sticks in my head: "And his answer trickled through my head, like water through a sieve."

http://homepages.tcp.co.uk/~nicholson/alice.html

A lot of stuff just trickles through my sieve-brain. Sometimes I say to my kids, "I'm sorry, could you tell me again? Your answer trickled through my head like water through a sieve." I don't think this is anything new--I've been like that all my life (and let me tell you, my teenage boys seem to have a terrible case of sieve-brain sometimes!).

I had totally forgotten our conversation, too, so it was nice to not only find it on google, but find it neatly addressed to me!

If I had polymyositis, it may have been hard to diagnose in the beginning. But it wouldn't be so hard to diagnose now, right? After three years, there would probably be, like you say, noticeable changes in my muscles. So that's reassuring, too.

As for the strange Greek-Latin name, I sort of appreciate it, because when you tell people you have "myasthenia gravis," they take in the "gravis" part and figure that whatever it is, it sure sounds serious. I've also heard it called "Goldflam Disease," which is sort of interesting but evidently didn't stick.

Abby

Abby, I upped my Topamax to 125 mg this morning after THREE killer migraines in the past two weeks (these weather fronts are "killing" me) -- so, I'm probably gonna have an even MORE MAJOR case of "sieve-brain"!! LOVED that quote!! IF I had ever heard it..............I have forgotten!! (LOL) Of course THESE days, I am forgetting tasks as I travel from one room to another in my house.

Hmmmmmmm........Goldflam Disease. Gonna have to look that one up.

Ain't life fun?!?!?!?

The first doctor who ever told me about MG was from South America somewhere, with a very thick accent. I had a hard time understanding common English words and had never heard of MG. Hubby: "So how'd it go?" Me: "I don't know, I think he's checking to see if I have gravitas"