Yes, the muscles of the face tend to be positive early on in MG. You can test yourself for ptosis or double vision, but you could see a neuro-ophthalmologist as well.

Put your pointer finger in front of your eyes about a foot away. Slowly move the finger back and forth in front of your eyes, while your head stays still. Do you see one or two fingers? If you see two fingers and close your eyes, do you then see only one? That is called "binocular double vision," and is typical of those who have MG. The muscles around the eye focus differently, due to weakness.

You can also take photos of your face in the morning and then later in the day to see if you have ptosis. Some people don't even notice they have it.

Do you become worse in hot weather? That is typical of those with MG. So try to stay cool. If you do become too hot, cool down right away, and even take a nap if you can.

The Single Fiber EMG is difficult to do, even for those with experience. The fact that you had 20% decrement is very telling.

Mestinon rarely has a placebo effect. Does eating food have a placebo effect? If a person without MG were to take Mestinon (which many Gulf War service members did), they would have symptoms of diarrhea, excessive tearing (eyes watering), increased bronchial secretions, twitching and cramping muscles, etc. from an overdose of acetylcholine. People with MG just become better on Mestinon.

I can't say if you have MG. But you seem to have the signs and test results indicating that. You probably need a long conversation with the doctor about doing other antibody tests, what treatments there are if you have MG, and what the next steps might be.

You could always consult with Dr. Eymard. Many people do.

If you do have MG, there is a lot to learn about it. I don't want to overwhelm you with info until you have a solid diagnosis. If there is anything you need, please ask!

Annie

Hi Annie, thanks a lot for your response.

As I told you the other doctor seemed to know much more than the one who did it on thursday.

The thing is that muscle weakness has improved a lot with mestinon despite of the fact that it hasnt completely gone.
After three days taking it I am waking up refreshed, thing that i havent done in years..

I canīt talk with my neurologist until 20 th august, but I think that I certainly can have it.

Thanks a lot for your interest. I will tell you all when I know more.

Navario.

One other consideration is to make sure they do the testing with the muscle warm. If you look in the Hot Weather thread I posted a study that showed a 5C change in temperature can have a huge impact on test results.

BTW I was also scheduled for my first EMG test on Aug 20.

So if the doctors I saw did the EMGs in room so cold I needed a blanket and was still chilly, the results were doomed? Most likely nothing would show?

The article was from 1974 and was a nerve stimulation test vs SFEMG if I understand the difference correctly. As I understand it though I think the results should still apply, at least generally.

At 31C the reduction was 9% which is near the bottom of normal. Warming the muscle 5 degrees to 36C resulted in a 44% reduction which is large. In another test they cooled a muscle from 34.2C to 30C and reduction in response improved from 25% to 4%. From that they conclude that false-negative diagnostic tests can happen due to unduly low temperatures.

Here's the full citation

S. Borenstein, JohnE. Desmedt,
TEMPERATURE AND WEATHER CORRELATES OF MYASTHENIC FATIGUE,
The Lancet,
Volume 304, Issue 7872,
1974,
Pages 63-66,
ISSN 0140-6736,

Grrrr! This makes me so angry! That room was freezing cold. I was freezing cold, even under a blanket they gave me. And the AC vent was straight overhead blowing an ice cold breeze directly down on me. Way to go, doc.

Every other EMG I've had, the room was really cold. What the heck???

Hydration plays a role as well. Subcutaneous fat (between the muscle and skin) of 9 mm can reduce an EMG signal by 80 percent. And men's muscles fatigue more quickly than women's do, which might be why the average time for a man to be diagnosed is 1 year, but the average for women is SEVEN years! Frankly, I think that's due to sexism!

The best MG centers will make sure an MG patient is good and warm while having an EMG/SFEMG. In some places, they soak someone's legs in warm water first!

I hope the appt. on Monday goes well, Navario!

Annie

Thanks guys.

I have realised that coke can act as Mestinon.

I had some glasses of coke just before my last emg, the one which was negative

Can this have afected the repetitive emg?

My neurologist want me to try Prednisone since I have got thymic hyperplasia and one positive emg.

I feel much better since mestinon, but it doesnt work every day and sometimes i dont take it and im fine, other days i take it and im not, other days it helps some muscles but not others. Itīs strange.

The point is that I am not sure if this is MG or not so I am scared of prednisone.

Thank you all for your replies.

Hi, Navario. So the neurologist believes you have MG. Then you probably do.

Not the coke, but the caffeine. There are no studies showing that caffeine can affect EMGS like Mestinon. But the science is technically sound.

I am not a doctor, so take what I say in that context. I do not think that Prednisone should be a first line drug for MG. But that's the algorithm they have. Mestinon is a helper drug. So the first drug they offer to suppress the immune system is Prednisone.

Steroids shut off the adrenals. That leaves a person open to adrenal issues if they become emotionally or physically stressed. Usually the adrenal glands adapt to those changes. A constant dose of Prednisone does not. The body becomes used to a particular dose as well. And when patients try to go off of Pred, no matter the dose they are on, it is near to impossible. They can also have signs of an adrenal crisis, which can be life-threateing and can make MG worse. MG can also become temporarily worse after first starting the drug.

Prednisone also causes a LOT of side effects and can cause diabetes. Sure, other immunosuppressants can also cause a risk of cancer, anemia, increase risk of infections, and lots of other issues. But no other drug is like steroids in what havoc it can wreak on the body.

A CT can't show a thymoma for sure. If you take immunosuppressants, that can increase the cancer risk.

Mestinon helps. But if you increase your activity, your muscles demand more acetylcholine. Mestinon might not be able to keep up with that demand. Our muscle receptors only allow for just so much acetylcholine to get through.

Mestinon kicks in after about 30 minutes. Two hours after that point, it wears off. How much are you taking and how often?

Only you can decide what kind of treatment option works for you. If you are wary of the diagnosis, Dr. Eymard is a great doctor for a 2nd opinion.

I really hope you will discuss more with your neuro, or another one. I wish I could do more to help you!


Annie