I wonder if anybody could recommend a good neurologist in Macon or Columbus Georgia that could help me get to the bottom of all this.

You all got me to thinking. I found some pictures of me that were taken before I got on mestinon. I look a lot better. I get frustrated with all of this stuff and I guess that I do want to deny it. At least this neurologist is not going to kill me with medications. He actually talked me into ditching a bunch of psychoactive drugs that I was on for the craziness that I don't have.

Here is a typical doctor's advice from my perspective.

1. You're tired? Here, take this antidepressant.
2. Out of breath? Must be panic attack. How about some benzos?
3. Your speech is slurred? You must be an alcoholic.
4. Your eyes look funny? Let's run $10,000 dollars worth of tests.

GOOD FOR YOU!

Sounds like your head and your humor are in great shape to me!!

Can you really take a person that has absolutely no abnormal tests and judge their condition based on an ice bag on their eyeball making things better? And if you can, wouldn't it be more economical to start there and then call it a diagnosis?

A LOT of us got "started" down the road to an MG diagnosis when "The IcePack Test" was positive....

I was >>>this close<<< to getting a "free" eyelift (insurance would pay for the bulk of it because it wasn't for cosmetic reasons) - I was thinking "I'm gonna look 10 years younger!" - and the eye doctor said "There's just one more test we need to do to rule something out; nobody EVER tests positive for it...."

....and 10 minutes later I was getting a referral to a neurologist.

(And no eyelift, either.... )

The icepack test is highly diagnostic - the specificity correlations are some of the highest that I have seen out there. If your eyelid raises up after ice is applied for 5-10 minutes - even if it's just for a second - there is a better than excellent chance that you have MG.

Right now, you are going through the "denial" phase. It's normal, we've all been there, and we've all worked through it. You will, too.

But from the sound of it, you've definitely got MG.

The first thing to do is to figure out what dosage of Mestinon your body can tolerate - it may be 60 mg, it may be 90 mg, it may be 120 mg. Too much will make you sick, and too little won't be effective.

Once you have established what dosage your body needs, then you can figure out how often your body takes to "run through" that dosage. For some people it's 3 hours, for others it's 6 hours. Everyone is different - there is no "standard" dosage or schedule.

This is a rare disease - only about 600 people are diagnosed with MG in the US each year. Most doctors have never dealt with it, and even neurologists who specialize in it don't always understand it fully.

It's hard for a doctor to look at someone who looks fine on the outside and who tests negative on all of the standard tests and believe that there is anything wrong with them. They're human, and they can only go by what their eyes tell them and what they have been taught. It is a truly gifted physician who can go the extra mile and be an analyst as well as a diagnostician.

Doctors can't tell what we feel like on the inside, and as you well know it is hard to understand what you are going through unless you've been there yourself! Thank goodness for the Internet and all of the wonderful people on this forum....

I also was hoping for an eyelift.

Oh well, I guess I might as well get old........

I am in denial. You are all right.

What about

D. Oculopharyngeal muscular dystrophy? Is that routinely in the differential diagnosis for seronegative MG, are doctors checking for that?

Not that I know of. What would be the diagnostic criterion for that condition? Would you see it on an EGM?

I just looked that up. Since it is an autosomal dominant disorder, and there is no family member with the disorder in my case, that cannot be what it is.

I don't know anything but what I google, but I see that the disease can be recessive as well. Also, there's the possibility of a de novo mutation (that means that the person who has the disease didn't inherit it, but is the first person to have the gene). But I read that:

http://www.ncbi.nlm.nih.gov/books/NBK1126/

Abby

I guess you googled deeper than I did. I wasn't sure from the website that you posted if there is a specific test at these labs for the autosomal recessive type or not.