I started having ptosis problems over a year ago. I had an MRI, an EMG, blood tests, an EEG, a psychological examination, and everything the neurologist could throw at it. All the tests were normal with the possible exception of that I might be a bit crazy.

He sent me to an eyelid surgeon. The eyelid surgeon said that I had seronegative MG and would not do surgery. I ended up at a second neurologist. He put me on Mestinon. I seemed to have some improvement. The second neurologist insists that I have MG.

Then I started having systemic symptoms. I fell several times. My voice goes out sometimes. My tongue gets thick feeling and I can't talk that well. I still have some ptosis. I have intermittent vision problems. The opthamologist documented that my vision with glasses had gone from 20/20 in my right eye to considerably worse in just a few weeks.

My dosage has gone from 60 mg twice a day, to three times, to four times a day.

So my question is this. Could I NOT have MG, only have a surgical eyelid problem, and all the systemic problems are being caused by the Mestinon? I don't want to spend the rest of my life messed up due to a doctor mistake. Well several doctors. The vote is this.

1 neurologist and 1 internal medicine specialist say I don't have MG.

1 neurologist, 1 internal medicine specialist, and 2 opthamologists say I do have MG.

What should I do?

Hi. First, let me say I sure do sympathize with your uncertainty. I'm also seronegative, and one doctor thought my SFEMG was inconclusive. I'm being treated with Imuran based on the second doctor's opinion.

When you say you had all the tests including an EMG, I am assuming you mean you had a single fiber EMG. I'm also assuming that you were tested not only for the AChR antibodies, but also for MuSK and LEMS.

I don't have any answers (obviously), but I have a few comments you might consider. First of all, it is typical for MG to start as ptosis and then become systemic.

Second, it's true that too much Mestinon will make you weaker. But too much Mestinon will also give you side effects. When I take too much, I get little muscle twitches in different places on my body. From what I've read here, that's typical.

Could you talk to your doctor about stopping the Mestinon for a bit to see what happens? The reason I say "talk to your doctor" is that it could be dangerous. If you do have MG and it's severe, but the Mestinon is helping, you could have a crisis. Another caution is that MG can be so very variable that you could stop taking the Mestinon and feel much better or much worse, but it could be just a coincidence.

One more thing: when people are at the ptosis-only stage, it's very common for them to test negative for the antibodies. Often they test positive later on, when the disease becomes generalized. Get tested again!

I hope others here have comments to add.

Abby

Hi Southblues...welcome!

Ditto to what everything Abby said...and I have a few more tidbits.

I am seroneg and borderline fail on the SFEMG and take between 180 and 240mg Mestinon per day (depends on weather..read this as how hot it is!...my level of activity, how much rest I got, etc.)

My point is my neuro said that anyone without MG could NEVER tolerate half that much Mestinon in a day!! If you are noticing positive differences in your overall ability to function (even if the eyelids are not responding perfectly), you probably have MG. And if you are taking 60mg x {any number of times per day} without increased weakness, you probably have MG.

Some other home tests you can try...

Ice Pack test
1) notice exactly where your eyelids are in relationship to your pupil when you look into the mirror straight on. Be sure to note any difference between the left and the right.

2) place an ice pack on one eye for a minute or two and then note where the eyelid is in relation to your pupil.

3) repeat with other eye

This is a classic clinical MG test...an MG'rs eyelid will be higher from the pupil after ice.

SMILE test
1) Do a full happy smile into the mirror when you get up in the morning and note where the corners of your mouth are. Do they curl up at the corners...how far?

2) Do the same thing about 45 - 60 min. after Mestinon

3) Then do it again before you take your second dose of Metinon later in the day.

MG'rs have much better smiles when they have Mestinon on board. (My hubby often asks me if it's 'time for a pill' based on my eyelids and or my frowny face. He's almost always able to tell before me that I'm running out.)

There are a few other home tests on the internet that you can google for -- but these are pretty easy ... and telling. There's a gotcha though. Rarely are two days the same..and sometimes things change within the day too. I've been dx'd for 3 years now, and still get surprised with new or different symptoms or responses.

Just know that if you ever have trouble breathing or swallowing, or feel short of breath, have trouble chewing or talking....it's not your imagination and it is a big deal. Rest immediately,,,and if breathing doesn't get better quickly,,,go to ER.

This only proves that you are a normal human being and also increases the likelihood that you have MG. (according to the Modified Alice criteria-see below).

There is a saying that if one person tells you that you are drunk, you can ignore it, but if 10 people do, then you are probably drunk.

This is absolutely non-applicable to sero-negative MG.


No matter how many people (including leading experts) tell you that you do not have MG, you can still have MG.

( I have personally learned that the hard way).

I haven't done a study on that, but I don't think there is any seronegative MG patient that was not told at least once (or possibly numerous times) that he/she have nothing physically wrong with them and only suffer from some ill-defined emotional problems. (or at the most may have very mild/ocular MG).

I use the modified Alice criteria for diagnosing normal tests-seronegative MG:

1. fluctuating muscle weakness.
2. normal test results (including antibodies, SFEMG done by an experienced EMGist)
3. symptoms which are clinically suggestive of MG (or else those tests would not have been done)
4. variable response to mestinon (anything from improvement to worsening or even unpredictable response).
5. no other reasonable alternative diagnosis. (this requires that you have been seen by an MG expert).
5. Some kind of ridiculous psychiatric diagnosis (eg-preocupation with symptoms that effect every aspect of your life, "anxiety" when you have difficulty breathing, "depression" when you have to come to terms with being unable to do what you could easily do before etc.).
6. Abnormal tests which show of some form of muscle weakness but are considered as "false", nonspecific, could be in the normal population etc.

The more criteria you have, the higher your likelihood of having seronegative MG. Having all 6 is a near-definite diagnosis.

Note: I haven't yet done any validation studies on my diagnostic criteria, so please be aware that they may possibly be wrong.

As the medical community has not yet accepted this entity (normal tests seronegative MG) it is always better if your illness is diagnosed as diagnostic SFEMG seronegative MG. Makes life easier for everyone.

I see this as a double choice question:

A. surgical eye problem
B. generalized MG

You forgot :

C. ocular MuSK MG, worsening with mestinon.

My suggestion: try to gradually decrease the dose of mestinon (never do things abruptly when you possibly have MG) and see if you are any better.

20 years ago, I was hospitalized by a neurology resident for an MG exacerbation. (A few months earlier he prescribed mestinon for very mild symptoms I had). I gradually took more, because I wanted to have a normal functional level. The leading MG expert who saw me the next day, doubted this diagnosis (because all my tests were completely normal), so all my medications were stopped. A few days of bed rest in the hospital and stopping mestinon led to complete resolution of all my symptoms. This clearly ruled out the possibility of MG. I was told that I could keep on taking a very low dose of mestinon and actually advised to stop it all together (which I eventually did). I had no MG symptoms for 15 years.

In retrospect, I had very mild MuSK MG then. The mestinon made it worse (even though it sometimes led to improvement which confused me and made me think I should take more). Once I stopped mestinon, I could easily adjust to the very mild symptoms I had (or possibly they indeed totally resolved) and lead a completely normal life.

Wow. I really appreciate all your input. I am still pretty unsure of what I should do.

I just recently increased my Mestinon dosage. My eyes are not that different if at all on the higher dose. I have the vague impression that I am not as weak. I sometimes get this weird feeling in my tongue that electricity is going through it. It is very similar to singing on a stage that has a poorly grounded microphone making you get zapped. At first I thought it was a new MG symptom, but I am beginning to think it is a drug side effect.

Has all this turned me into a hypochondriac or is it real?

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?

I hope that I am just crazy because I suspect that is easier to treat.

I know that when I was checked, I was negative for AChR antibodies.
I was also negative for MuSK.

I don't recall the LEMS.

Please realize that there are times when the mestinon is of little help. Last year when my MG was rageing the mestinon did little to stop the ptosis and double vision even though I was taking up to 360mg and more. I ended up on prednisone which stabilized the MG but had side affects. There are other treatments for MG and you should consider all of them with your doctor and find out which is best to treat your symptoms. Find a nuero that is experienced with the disease and you trust. There is always the Mayo Clinic or John Hopkins where you know your diagnosis will be well researched.
Al

!!!!!!

I think that it was Sherlock Holmes that said that once you have ruled out all other possibilities the one that remains as unlikely as it seems is what it is.

Obviously no one really uses the "modified Alice criteria for normal tests-seronegative MG", but sometimes it becomes quite ridiculous that they don't.

Also, medicine is a clinical profession. This means that you diagnose an illness first and foremost based on the clinical picture. Diagnostic tests can only support a sound clinical diagnosis.

Yes, I went through that phase too...
I thought that probably I am just overworked, a bit more stressed than I think...

Our illness unfortunately, does not depend on what we want it to be. It is what it is and burying our head in the sand just because no one is ready to commit himself to give a diagnosis is (from my personal experience) not a very good strategy.

Any how good luck with finding what your illness is, and more important finding what can make it better.