Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Single fiber emg for medication change

joel123
joel123

Hello,


When i have issues, my doctor does one, or several, single fiber emgs?   These are uncomfortable to have done, and not very informative, at least to my understanding.  Does your doctor use a single fiber emg every time you have a need for medication change?


Thx, 


Joel

Rhanson
Rhanson
I haven't heard of sfemg tests just to adjust medicine. Most of us are asked how we are doing and adjustments made on the answer.

Most folks have a single fiber emg one time for diagnosis of MG. Although I think it may be useful to the doctor to use that to tell if your medicine works, it is an expensive and painful way to do it.

I asked my neuro at Mayo Clinic - MN about having ongoing tests to see how I am doing (I asked about blood tests) and she replied -- that is not necessary ,all I have to do is ask you how are you doing. And that is what she did. I had no more tests after the test that said I have MG.

Personally, I think the doctor should just ask you how you are doing like my doctor did. Maybe the doctor makes a lot of money off of the tests. Ask the doctor why he keeps doing this. I think the only time I have heard of multiple tests are when the first one didn't show MG and another one was tried to make sure.
Good Luck
Russ
joel123
joel123
Thx Russ,

This is what I was thinking too... I am frustrated with these tests, feel like a lab rat and I already know how I my MG is doing !

Thx again,
Joel
fihghter
fihghter
these test are the favorite of primay doctors as they are instructed by the insurance co. to keep cost down, they are ineficient with mg, due to the fact they look for the enzimes been up or down,this is why the have so much misreading and inconclusive. THE TENSILON test for mg. is the only one that can give you if you have or not, but because it is expensive . dont forget you are in control of your disease, and have to raise your woice, when things happen and not letting these doctor to get away, you are the patient and they have to hear you, also you need to have the proper doctors, which is an internal doc. and a neurologist, i put a blog with the name of feinition of mg. please take a look and you will understand what most of you going thru and you be surprise reading toward the end, which started in capital letters. enjoy, give me back your inpout, will be appreciated. Andre(fighter)
PeterL
PeterL
As far as I know, there is no known test to check the efficacy of MG medication. Put another way - are we getting better or worse? On the back of that, for what it's worth, he's wasting both your time and your money. However, that's not what I would say to him. Why not ask a direct question - what does he think the test will prove/show and what will he deduce from that?
fightingMG
fightingMG
Hello, The doctor i consult doesn't tell me to undergo an EMG each time medicines have to be changed.
I was initially diagnosed in 2010. An EMG was done during that time. Since i didn't receive proper treatment the disease and its symptoms worsened and i developed other conditions related to my immune system. In 2017 i underwent a second EMG by another doctor for the confirmation of MG. Some of my medicines are changed every 1-2 months. Each time i consult him, he only asks me whether there is any improvement. Depending on that he changes the medicines. I don't have to undergo an EMG every time.
fihghter
fihghter
i have to agree with Rhanson in the fact that doctors are taken us for a ride, to understand my words, i will have to clearify all statments

MG. IS THE OLDEST AUTOINMUNE DISEASE IN THE WORLS, WAS DISCOVEREDED FIRST TIME IN ASIAN IN 1625-45, THEN OFFICALY IN 1672 BY THOMA WILLIS,

DO YOU ALL REASONABLY THING THAT A SOLUTION COULD HAVE BEEN FOUND,???

NO BECAUSE IT IS AN ENVIRONMENTAL DISEASE, AND THUS MORE CONTROLABLE,
all the test that a doctor prescribe as no value to us,, because mg,the only way you can be certain is by having the tensilon test, (which is an injection of mestidone) and expensive, so the insurance company are all for blood tests which are 1) inconclusive, and a money wasted, so yes, you should have extensive talks with your neuro, not primary's has they are not suited to help, mistakes with differents meds, which could lid you to disaster, so make you woice hearded, that you lifein you own hand as we all have done for centuries,it is our disease and nobody else can controle it. so to and, have a good neuro, and a internal med for all but mg, have lenfgty discutions with them in regard of proper meds, the 2 basic and more important are mestidone, and prednisone, do not let them impose meds, that can be detrimental to you
best of luck Andre(fighter)