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...
I am seronegative and my EMG was inconclusive and it was done before I started on mestinon, so I am going to the MG clinic, 6 hours from here, in a week for a SFEMG. Not to worry, my husband will do the driving.
I am concerned that it too will be negative.I know from reading all the posts that I have to be off the mestinon for a period of time. Thing is, for how long????? I have read everything from 24 hours to a full week! I really don't want to get a false reading because the mestinon wasn't out of my system. At the same time, I am pretty useless without the mestinon. Anyone have any advise for me? I am starting to fret over itsilly, I know, but another negative test is a very frightening thought.
Deb.
I am concerned that it too will be negative.I know from reading all the posts that I have to be off the mestinon for a period of time. Thing is, for how long????? I have read everything from 24 hours to a full week! I really don't want to get a false reading because the mestinon wasn't out of my system. At the same time, I am pretty useless without the mestinon. Anyone have any advise for me? I am starting to fret over itsilly, I know, but another negative test is a very frightening thought.
Deb.
I will say a prayer for peace.
Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Dee
Annette
No caffeine, as long as you can, prior to the test.
Exercise, or walk. Immediately beforehand, if you can.
Try to tire your muscles, without exhausting yourself.
Keep yourself warm, to the best of your ability. Even on the lab table, use several blankets, if you can. (Warm muscles show fatigue characteristics, more readily.) (If you go into a test lab, that's cold? That's not a good thing.) (Sorry.)
Ask the doctor, to warm the test areas, before testing.
Our friend Jeannie did that, and the doctor agreed.
What else, gang? It seems like there's something else.
If you pass these tests? Don't be surprised at that. EMG/SFEMG tests are useful, but hardly conclusive. My AChR blood tests - showed antibodies off the scale. Yet I passed my EMG tests - with flying colors.
That's okay. I ended up, with a referral to a MG-experienced neurologist in Boston. That? Was a very good thing.
- Ross
Annette, I didn't know about the cold room when I had the EMG, it was freezing!! No wonder the test was inconclusive.
Annie, Nice to see you back here. Thanks for the advise, I am going to try for 4 days, but I will watch for the danger signs, and if I have to take a mestinon, I will, but I am thinking that if that happens, I will be sure to record it on my phone, so the doc can see. Just hope it doesn't go there.
Ross, I hadn't thought about moving and exercising, I will try to walk from the car, and will be sure to have a fleece jacket to stay warm. i am not the type of person to complain about the cold room, but in this case, I will, if I have to.
To all of you, thank you for your support and advise, I am not nearly as anxious as I was. What a great group, this DS family.
Deb.
Even at 24 hours there is some active level in the blood. When I had my SFEMG I toughed it out somewhat and allowed for 4 days. Of course only do what you can do safely, thats whats the most important.
Joe