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 went to see the neurologist today. He asked me about new symptoms and I told him about the hand tremors and weakness and trembling in my face and extreme weakness I have been having.
I found out that the nerve test I had with him last time was "not" the single nerve test, even though he poked needles into me and it was very uncomfortable. He said he is fairly certain I have MG but wants to send me to Medical College of Georgia in Augusta to have the single fiber test done.
He told me that even though my antibody tests were negative, I could very well have MG, but he does not want to start treating me for it agressively until he makes sure I don't have something else. He said the problem is that most of the other things I could have are mostly not treatable and he hopes it is MG because there are treatment options for that.
He was not going to give me any medication till I got the SFN test, but I told him about how bad and how scary my symptoms have been and that I needed something to help with symptoms until I get my definite diagnosis. He agreed to give me mestinon, but told me I will have to go off of it at least 4 days before the test. He wants to see me back in his office one week after I have the nerve test.
I took the first pill around 12:15 and it did seem to help a little, but of course that could be the placebo effect, plus I had to stop for coffee when I was out because the trip to the doctor had left me really shaky.
I got 60 mg to take three times a day. Hoping to have good results from this med.
I found out that the nerve test I had with him last time was "not" the single nerve test, even though he poked needles into me and it was very uncomfortable. He said he is fairly certain I have MG but wants to send me to Medical College of Georgia in Augusta to have the single fiber test done.
He told me that even though my antibody tests were negative, I could very well have MG, but he does not want to start treating me for it agressively until he makes sure I don't have something else. He said the problem is that most of the other things I could have are mostly not treatable and he hopes it is MG because there are treatment options for that.
He was not going to give me any medication till I got the SFN test, but I told him about how bad and how scary my symptoms have been and that I needed something to help with symptoms until I get my definite diagnosis. He agreed to give me mestinon, but told me I will have to go off of it at least 4 days before the test. He wants to see me back in his office one week after I have the nerve test.
I took the first pill around 12:15 and it did seem to help a little, but of course that could be the placebo effect, plus I had to stop for coffee when I was out because the trip to the doctor had left me really shaky.
I got 60 mg to take three times a day. Hoping to have good results from this med.
If you take three doses a day, how do you space them out?
I did experience excess salivation for about 5 minutes about 30 minutes ago, but then it went away.
Thanks for any help.
Seems like for most people it kicks in within 30 minutes, but some have said that it takes longer. It doesn't seem to do much for me, unfortunately, but I still take it just in case, and I don't have any side effects. Give it a couple days, ok? My doc bumped me up to 90mg, 4x day, which will hopefully help more.
You salivating seems to indicate it is having some effect. There is always a possibility you do not have MG, and of course it is also less possible, but possible you have MG and do not respond to mestinon.
Coffee(caffeine) would likely help you for MG also. Make sure you don't have any near the time of the Single- Fiber EMG Test also.
So you know, I hope you have good results with mestinon also. Whether mestinon works for you or not, it cannot control MG.
Let's see what the tests show. Keep in touch with us noodle!
Best of luck to you!
TJ
I don't think sleep disturbance is a common side effect.
No problems with sleep. Sometimes it takes a few days to work its best and some people my even get weaker at first. So hang in there, give it a good try. Also I occas. get a cramp feeling in stomach- digestive problems vary with each of us....it seems to help me to take it with at least a little food. Good Luck!!
P.S. I noticed the excessive salivation esp on the evening , my neuro thought i might be taking too much then...another reason i cut back to 30mg in eve. unless i will be active.
So glad I found this group!!!
Annette