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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My SFEMG prep (with questions)

deleted_user
deleted_user
Alright friends, the 2 week countdown is on for my SFEMG. Me, miss seronegative, multiple neuros Tricia.

Now, I have read the SFEMG prep stuff in the links group, which is great.

Here is my plan, with questions noted:

1. SFEMG is on a Friday.
2. Stop taking Mestinon that week Tuesday.
3. I'm supposed to have the body part tested (which one? mg expert who will test said likely arm and leg) WARM. How do you warm an area of the body in advance?
4. Links info also says to lightly exercise the area before the test. What are we talking about here?

I have a lot riding on this test. Seronegative, so the SFEMG becomes even more important. After seeing a number of neuros, the guy doing the test works in the Neurology dept of the local U's MDA clinic. He's also on the board for our state's MGFA chapter. Based on his clinical exam alone, and my positive response to mestinon, he gave me a preliminary dx of MG.

Hugs to all,
Tricia
MGOhio
MGOhio
bump
ragdoll
ragdoll
My neuro says the Mestinon is no longer keeping me strong enough and he fears possible respiratory crisis; has put in a consult to a specialist MG neuro and a SFEMG. I am seronegative, negative thymus CT, had severe double vision before Mestinon (mestinon improved me 85%, but I'm progressing with more breathing weakness). My fear is the 2 hour ride in heavy freeway traffic (I wouldn't be driving) through congested Seattle to a huge university hospital with dubious parking (we have a tall van unable to use garages), but mainly having to give up the Mestinon 24 o 48 hours (I don't really know how long). Breathing and walking has been increasingly difficult WITH the Mestinon. I fear I won';t be able to do either without it. and this for just another test that can be negative and still have MG (according to my research)?
Anyone have trouble with insurance if ALL your tests are negative, but you still have MG?
Nanosecond
Nanosecond
Ragdoll, I am also seronegative MG. My regular EMGs were negative, and all we had to go on was that I improved -especially my double vision - on the Mestinon.
It took months for me to be scheduled with a MG specialist and for a single fiber EMG, and I was also nervous that it would be negative. Surprisingly, I did ok not taking Mestinon for over 24 hours before the single fiber EMG, but I did have to wear an eyepatch to the test.

My single fiber EMG of my frontalis (face) muscle was so positive that the test was discontinued early. All my other tests are negative. My MG specialist says that I am now confirmed seronegative MG.

Before the SFEMG, I asked the MG neuro, what do I do if it is negative since the Mestinon helps me so much? She said that we will see first how the test goes. Wise advice.

Talk to your neuro or your neuro's nurse re your concerns about being off the Mestinon before the test. If possible, maybe an additional person can go with you so that you can be dropped off at the hospital for your test while your vehicle is parked.

Good luck, and please let us know how you are doing.