[NAVARIO]

Hi.

First i would like to introduce myself, Im Navario from Spain. English is not my first lenguage so please be patient.

As the tittle says i had an emg 1 month ago which was positive in my face. I had another today with another doctor because my neurologist wanted to confirm it since im seronegative

The doctor who did it said that all seemed to be normal but she will have to analize information.

I dont know what to believe, am I crazy or there was a mistake in the first one or in the second?

Thanks for your time

[kiwi33]

Hi Navario

Welcome to NeuroTalk .

The MG forum is very active so I am sure that you will get lots of support and helpful suggestions from other members.

Best wishes.

[NAVARIO]

Originally Posted by kiwi33

Hi Navario

Welcome to NeuroTalk .

The MG forum is very active so I am sure that you will get lots of support and helpful suggestions from other members.

Best wishes.

Thanks Kiwi

I know there are lot of people here who can help, have been reading you for a while.

Thanks for your words

[Jomar]

Seems like the drs would want a third one to see which way it points..

[AnnieB3]

Hi, Navario! Welcome to the forum!!

No worries, your words came across very clearly! I don't speak Spanish, so I hope I'm writing well enough for you!

Did the doctors run the MuSK antibody test? LRP4? Those are the two newest tests, other than the Acetylcholine Receptor Antibody one.

Did you have the 2nd EMG on your face or in another area? Is there anyone in your area who can do a Single Fiber EMG? Bruno Eymard in France does them. Well, a colleague of his does. He does the clinical exams.

Bruno Eymard – ERN-EURO-NMD

EMGs can fluctuate over time. If the first test was highly positive, then they really can't discount that result just due to the 2nd one being negative. Results depend upon what muscle they are using, what drugs someone is on (steroids and other immune suppressants can make the results look normal when they are not), and the experience of the person doing the test.

What are your symptoms?

MG is pretty easy to spot, since only MG, CMSs, and LEMS show fatigable muscle weakness.

What else can we do to help you?

Doctors in Europe are pretty familiar with MG. Are you confident in your neurologist? I hope so!

Take it easy until you know what is going on for sure.


Annie

[NAVARIO]

Wow Annie!

i wasnt expecting that explanation. Thanks

My first EMG was done in the right hand in my eye. The one in the hand showed a decrement of like 6 or 7 % which was normal to the doctor who did it.

The one in my eye showed a decrement of near 20% so he said it was clearly abnormal. It was much more painfull and longer than the one i was done before.

The point is that I havenīt symptoms in my face but the first doctor said that it was not needed and that the face was the place where it was more easy to detect since it is a small muscle.

I have got proximal weakness which is better when day starts and worse when finish and they did the test because they found thymic hyperplasia in a tac.

Regarding SFEMG, i think doctor tried yesterday to in the frontal muscle of my head, but she didint seem to know much about it, she told me that it was hard to do and that she would need my help and when we finished she told me that she didnt know if she could take much information from there.

From my point of view the first one knew much more about it than the second one.

I started taking mestinon yesterday and i felt great, but i dont know if it could be placebo or not.

Thanks for your help Annie.

Navario.

[AnnieB3]

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

[NAVARIO]

Originally Posted by AnnieB3

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.

[LeeMac]

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.

[winic1]

Originally Posted by LeeMac

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.

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?