You may want to ask your neurologist to let you do a trial of Mestinon. If you DON'T have MG, you won't be able to tolerate even the tiniest amount of it. All of my tests came back negative - my neuro even said that my eyelid wasn't as droopy as most of her other patients' eyelids were - but she went ahead and had me try the medication.

I started out with 30mg - no difference; felt fine. Three days later I tried 60mg - very slight difference; felt fine. After another 3 days, I tried 90mg - BIG difference; felt fine. And then 3 days after that, I tried 120mg - felt nauseous; started drooling excessively; felt dizzy and faint.

When I went back to see the Dr., I told her my experience, and also told her that I had started taking 90mg about every 4-5 hours, and could really tell the difference (even my eyelid looked and felt less droopy!). Well, that was enough for her to go ahead and make a positive Dx of MG - she said that she always waits for her patients to tell her how they did on the drug trial, and most of them do the same thing that I did (taking more once I found a dose that worked).

So it is entirely possible that you are one of those patients who tests negative, yet still has MG - and your symptoms are MUCH worse than mine were! If you think that you might have this disease, INSIST on being allowed to do a Mestinon trial. If you don't have MG, you'll know it immediately, because you won't be able to tolerate the medication. Remember, you are paying for a service, and you can always take your business elsewhere. In this economy, I don't think that any doctor wants to lose revenue....

My neurologist thinks I don't have MG, but keeps me on the Mestinon (I take 60 mg every three hours with no side effects). When we asked him if my tolerance of it (and the fact that it helps a lot) indicates that I have MG, he said no; he said that other diseases respond to it, too.

I'm not saying he's right--just that there's at least one neuro out there who would disagree with what Teresa says. Unfortunately, in my case at least, tolerance of Mestinon isn't enough to get a diagnosis. I wish it was, because I think I do have MG.

Abby

Abby,

What are the other diseases that respond to Mestinon? I'd love to know.

Just curious - -what are your doc's next steps to achieve a diagnosis for you?

Sue

Sue--I don't know. He was vague and I didn't press him on it.

There are no next steps, unless I get worse or my symptoms get more typical. He has given up. I could insist on being sent to Mayo, but he thinks that they wouldn't say anything different. He is _the_ specialist in neuromuscular diseases in my area (Providence, RI)--the top of the heap. He's the guy other people travel to see. So I'm at the end of the line.

Abby

Honey,

You just tell that doctor that it is YOUR body, and YOUR health, and that you want a second opinion. There isn't a doctor on the face of the planet who knows everything there is to know about ANY given disease. And frankly, some of the ones who have a reputation for being "THE" doctor that everyone goes to see can also, in many cases, be the ones who are firmly convinced that they know everything there is to know about their particular specialty.

It. Just. Ain't. So.

If you think that this is what you are looking at, then I would urge you to seek at least one other opinion. If the doctor that you are seeing now has a problem with that, then just tell him that whenever a car is in an accident, most insurance companies want to get AT LEAST 3 estimates before having any work done.

Your health is MUCH more important than any car.

MG is one of those diseases that manifests itself differently in each person who has it. What works for one patient may not work for another one. The presentation of the disease is as varied as the people that it affects. For a doctor to say that just because he/she hasn't ever seen it before doesn't necessarily mean that you don't have it.

For all your doctor may know, you might be his/her FIRST patient in that practice who has MG with ONLY the symptoms/test results that you have. A doctor who is humble enough to realize that he/she doesn't have all of the answers is a great doctor, indeed. You want to find a doctor who is open to ALL possibilities.

If nothing else, I would tell that particular doctor that the Mestinon is working for you, so if it's all the same, you would just like to continue taking it, diagnosis or no diagnosis. If your symptoms get worse, you can always go back and have more tests run in the future.

However, if it were me, I would definitely get that second opinion.....

Thanks, Teresa. I appreciate your indignation on my behalf! This is already my third opinion. This is the neurologist my old neurologist sent me to just to make sure I really had MG before he started me on the immunosuppressants. He's the MG specialist for the whole area. My next "second opinion" would be Mayo, which I certainly haven't ruled out.

He is happy to keep me on the Mestinon, and my prescription right now is for 180 pills a month, which is way more than I need--I take three or four a day.

I have an appointment in a couple of months, at my request, which I intend to keep even if nothing's different. The reason I'm being so passive about the whole thing is that at this point, I don't think I would want to go on the immunosuppressants even if he recommended them--because I was better for a while, and want to wait to see if my current relapse is going to last. I am not as sick as most of the people here. There is some justification at least for waiting to see how things develop before starting the big-guns drugs.

Thanks again for your concern. I really appreciate it.

Abby

Abby,
Hang in there. I certainly understand the frustration of seeing many neurologists, yet not able to obtain a definitive diagnosis. Do keep your appointment with your doctor, even if your symptoms have not drastically worsened.

I can't even count the number of neurologists I saw over a span of 7+ years, who couldn't really put all the pieces of the puzzle together, so would default to the status quo. It finally took a neurologist who recognized my atypical presentation AND recognized her discomfort with deciding a course of action without additional consultation. She encouraged me to be evaluated at Mayo and that was a positive experience.

I know here on the board people have had both good and bad experiences at Mayo, so being referred there is not always a guarantee that the medical mystery will be solved. But it often does help to have a fresh eyes on the subject. JMHO PM me if you want additional info on Mayo.

Cate

Coffeegirl, How is it going? Did you get results back? I once heard an MG expert say that it takes an average of one year for a man to be diagnosed with MG and it takes an average of 7 for a woman to be. Can you say sexism?

I'm not a good example because I discovered I had ptosis in 3-2000, was diagnosed in 2-2001 and have had MG my entire life (since 1958).

Some people get diagnosed right away, especially if they have obvious antibodies.

Sue, Patients with ALS, for example, can temporarily respond to Mestinon. In the long-term, CMS, LEMS and MG are the only ones that obviously and profoundly respond to Mestinon. That's why a clinical diagnosis is so important with MG. MG has a classic presentation, even if some people are "atypical." MG is still all about fatigable muscle weakness.

Coffeegirl, I hope you do get answers soon.

Annie

Not that surprising

I was told that Mestinon also helps SOME fibromyalgia patients. Also Mestinon helps for autonomic dysfunction IF it's autoimmune based. It may help other things too but typically (IIRC) docs only know of it being used for MG. The fibro usage is still sort of experimental and certainly off-label.

Stupidly, there was a neuro who thought I was a hypochondriac. They often do immediately if you have a "fibro"/chronic fatigue diagnosis. I could tell even though he was still TRYING to be kind of nice about it. (At least he tried and didn't cut me off. But I found him to be too rigid in his thinking.) He wanted to be honest too and said that he's seen plenty of people who abuse Mestinon! Apparently some idiots want that weirdo lightheaded feel? That's one of the side effects I hate, I hate them all and cannot tolerate most medications. So, that's frustrating. I mean, I think docs should be aware and try to keep meds away from abusers, but I (and others) are trying to get help and those people make it harder on us.

Actually I'm guessing that people who don't need it get a different effect than I get. That's pretty desperate if they are having fun with Mestinon, can't they just have a beer? LOL.

Then of course some believe we are just getting a placebo effect, and don't really need it.

And I think there was something else I wanted to say. Oh well.