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...
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
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
Bear
We seroneg's going out on the front lines need HELP!!!
Rosie
Your test will be during warm weather, so you are unlikely to go linto the building chilled, but you will want to take a sweater, all offices seem to be cold. Most people are trained to test the arm and around the eyes. Even if it is your legs that are weakest, that will be an unlikely place for them to do your SFEMG.
Since it seems unusual for the tester to warm the area ( although it was done in Charlottesville) you could take a wash cloth and ask about the area to be tested and use warm water. Generally they have you lift a finger which is exercise for the finger or look up which is exercise for the eye test. They may look at you funny regarding warming the area, but it is important. You might want to print out the paper about warming to take with you.
Supposedly the area of testing is not important, all muscles should show the abnormality, but why should they when they are differentially affected by everything else, so if you have one weak arm or eye then that is the one to be tested.
Since most people do NOT come in prepared, they will probably not be used to being asked to do this or that hand or eye, but It woukd be in your best interest to insist (nicely, they are also the ones that read the test). Since the neurologist doing the test already thinks you have MG, there may be no problem. But too often the test is done to rule it out, not to uncover MG.
Rosie, ask questions about the links on the discussions page. The Links group is primarily informational and a question might sit there for awhile before someone picks it up.
Recovering, b. (no flashlight, gave out about 4:30, but this is about day seven of very active gardening, hooray) .
Rosie
Thanks a lot!!
Rosie
That was Rosie's earlier question which I think was covered. The one about adrenaline and cortisol is a good question for your neuro. I think the answer to that one as far as the SFEMG goes is that it would have little effect. Certainly getting all keyed up affects your neuro exam. That has happened to me any number of times.
I spent a miserable week off Mestinon before I saw my present neuro and then had a good day at a bad time. After all that, he didn't repeat my SFEMG and read the former "suspicious" SFEMG as positive and believed my history. I didn't mind that at all. But since the SFEMG tests the communication between fibers, I think that would not be changed by a short charge of adrenaline and cortisol. b.
I went into all my tests? Expecting to see a positive diagnosis, on both EMG & SFEMG. Unfortunately, I tested well - too well.
And that! Threw a wrench - into my diagnosis, for a long time.
I went in, first thing in the morning, when my muscles were rested.
Don't go in - with rested muscles.
Walk around, outside the doctor's office, for a half-hour or more - if you feel that would help.
The test room - was so cold, it was like a freezer.
There is great wisdom - in warming the areas to be tested.
Stay off your meds, as long as you can - within reason.
Don't skip so many meds - that you get into trouble.
(I could never stay off my meds - for even 24-hrs.)
(Not without getting into ''ER'' type trouble.)
The other thing?
Don't stress over the testing.
There's no telling the results, ahead of time.
I was strongly seropositive, but passed the SFEMG - and all EMG.
By the way? If some crackpot Neuro - tells you?
''You passed the test - you don't have MG.''
Then kindly tell the clown:
''Well - I'm pretty darn sick. Let's ship me back - to the referrer!''
''Immediately!''
''And get some more darn testing - to figure this out.''
My local neuros - were stumped, after my SFEMG.
Even though strongly seropositive: they didn't know what to do with me.
Also: in 5-years time? ''Sero-negative'' - will be meaningless.
Medical researchers have done some basic research?
Hopefully, with more research to come.
That shows literally DOZENS of antibodies - that positively correlate to MG.
You won't have to wait 5-years.
Yours is a case, that these neuros - now want to solve.
(With you - driving them to it - all the way!)
- Ross
I did ask a wonderful doctor on another forum about taking a myasthenic provoking substance beforehand (in my case a couple of mg only of sedative) SINCE taking away Mestinon and caffeine are recommended. The doc said it wouldnt make a difference. What do you all think???
Mine is at 9.00 a.m. on the 11th and that is way too early. Am at least thinking of getting up at 2 a.m. in the morning and then by 9.00 a.m. I will reach my myasthenic peak (whatever that is for that day) Oh and of course...Im planning to wear wool underwear before the test!!!!
Best wishes for the moment,
Calmday
Ordinary exertion, heat to emphasize the difference between normal response to heat and MG response to heat are helpful. Avoiding drugs that cloud the picture, and caffeine has anticholynesterase effects, is very important and that would include any drugs that tend to make MG worse as well as better. Not only do you want a diagnosis, you want the right diagnosis, you want the doctor's confidence in you as well as yours in the doctor, and you want a baseline for treatment comparison.
Hoping all goes well, b.
My test is at 8:30am in the morning, which is an appt time that the doc selected himself. So I won't ask him to move the time, but will get up and about earlier that morning so I'm not "fresh out of bed".
Tricia
Then when they did my SFEEMG they forgot to.
I was fortunate that he tested my rt fore arm first and was able to get enough from that not to go to my face or eye.
It was a bit uncomfortable as the needle was moved but otherwise not bad.
I hope and pray you both have a simalar experience and get some answers from this.
Hugs,
Jeannie
Result---not MG despite my eyelid closing every day, the fact the optometrist forwarded a note saying ptosis of both eyes.
Peace...
Rosie