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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limpnoodle 01/25/2013

I am at Emory university in Atlanta ICU and had more EMG s today and the doctor says that without positive EMG, I do not have mg. I respond to mestinon 60 mg every three hours, but if the dose is late or I am over stressed, such as on the trip up here, my speech swallowing and now most other muscles are shutting down. Eyes will not open. Have to wait an hour after one of these episodes for the mestinon to take full effect. I am now on a feeding tube because I only have a small window of about an hour or so where I speak normally eyes are open and most muscles working fairly normally. When shift changes and there is a variance in med times I don't do well.

Does everybody have a positive EMG robe diagnosed as mg?

bweeds 01/25/2013

NO!!!!!!!
People who have MG do not necessarily have positive blood tests or positive EMGs or positive SFEMGs. All these are fallible studies done by fallible people. Clinical diagnosis and response to medication ought to trump lab tests. That they do not with some doctors and in some institutions is ___________. (I promise to be nice.)

This is why people smuggle in their Mestinon to escape the hospital and get where they need to be. I am so sorry that you are experiencing all this and even more sorry that this is not an isolated case.

Here is a post where online people presented their tests, in the links group there is also informatioin about emg testing which I am sure in your case was NOT done with no Mestinon on board--with Mestinon or caffeine the negative tests are totally invalid.

http://www.dailystrength.org/c/Myasthenia_Gravis/forum/12611102-seronegative-people-please-respond/page-3

Please let us know how you are doing and if there are particular studies you need. b.

Thirteenblessings 01/25/2013

Ii am sure quite a few will respond. I know I am neg on both of those and so are many others much more ill than I. I feel very strong that is almost as important as new treatments is finding more reliable diagnostic tools.

lojos66 01/26/2013

No!!!!!!!!!!!!!!!
I am a classic example.For 2 and a half years I have seen neuros who say I have "a rare neuro- muscular disease that defies diagnosis"Now I am now seeing a nuero who thinks outside the square and is willing to treat me on clinical symptoms not on diagnostic tests.
I would find a good neuro who is willing to listen
Lorraine

larissam 01/26/2013

No.
Please insist the hospital consult with your neuro.

deleted_user 01/26/2013

No conclusive EMG, SFEMG or rep stim (this one has slight anomaly). Seroneg. It makes me frustrated that the medical professionals are so afraid that they will let patients get sicker despite clinical symptoms jumping out at them. They forget you can die from MG whether or not your body cooperates to provide them the data they prefer. :-( I am sorry you are dealing with this.

becwithkids 01/26/2013

Like our other friends here... NO!
An EMG showing MG is not always found with us! Like B said... if there was mestinon (24 hours, i think) in your system that test won't be accurate and I am unclear why they would even run the test under these conditions.
Please get an advocate and another neuro's opinion.
Let us know as soon as you can how you are doing and blessings are coming your way until then.
Love, Becca

limpnoodle 01/26/2013

The only thing abnormal on my EMG was the repetitive stimulus on my shoulder , which was the last one he did and it was five minutes before time for more mestinon.

txkiki53 01/27/2013

I am chiming in....... NO!!!!!
I am like the rest and pray you get the right doctor to pay attention. I am seronegative and feel blessed that my neuro understands and thinks outside the box.
Annette

deleted_user 01/27/2013

Happy Sunday to you,
I had all the sysymptoms but was negative on both tests I have respended very well to mestinon.
Blessings to you
Wendy

art-chick 01/27/2013

Sounds like you have some abnormal data from your shoulder then??

I am so sorry to hear all that you are going through.

I was thinking that since you are unable to open your eyes, perhaps they would be willing to do the 2 minute ice pack test on them to see if you have improvement in your neuromuscular junction? That is a quick diagnostic in the hospital. Have they tried that???

Also, if you can get a friend or some support with you to be your advocate, that would be a good idea. It is too hard to go through all of this on your own (if you are).

Thanks for reaching out!

limpnoodle 01/27/2013

I told my daughter I remembered something about an ice pack test, but couldn't remember the details of how it is done. She is here with me and is willing to kidnap me or whatever I need done.
Fortunately, I am feeling somewhat better today. I am thinking it maybe the Ivig kicking in finally. I am still very fatigable but a far cry from where I was yesterday morning. They do have excellent care services here, so I could be in worse circumstances.
What aggravates me most, but I kept my cool about it, is that since all my tests were negative, they are going to try the psychiatric route. Wouldn't I be a lucky duck if this were all in my head?

limpnoodle 01/27/2013

Forgot to add that my eyes have been open so far all day!

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