Hi I'm brand new here, so happy to have found all of you. I was just diagnosed after years and years of ER trips in crisis, not one doctor ever knew what was happening to me, finally found a doc this year that figured it out (after 15 minutes of being with me, how is that possible? years of doctors and he knew it right away), so happy to have relief in that way. I know many of you went through the same thing. It has been a horrifying nightmare, I was sent home from ERs in full crisis, weird to say that the mg diag. is like daylight after a long long long night.

I have had so many bad reactions to medications that I'm scared to try the mestinon, I know it makes no sense at all. I guess I need some support to just do it, I think I'll try 1/2 or 1/4 pill? I had such a freaky withdrawal to the tensilon during my diagnosis that I'm just scared. I have two young kids also, I don't want to have a bad reaction and end up in the hospital again. But I know I need this med. I think all of my experiences with hospitals and doctors has made me so scared to take anything. Has anyone here had a bad reaction, like an allergy? I know I'm emotional, just being diagnosed, so many things to learn, I just wish I wasn't so scared. Thank you, I appreciate your time.

I also usually react badly to most medicine but I did well with the mestinon. I started with half a pill twice a day for the first two weeks. After that I increased by half a pill every three days until I got to 60mg four times a day. Yes I had some side effects but I felt so much better! I hope it goes well for you

Thank you, this makes me feel better already. I have a terrible stomach so I guess I'm afraid of that reaction too. It sounds like starting slow is the best idea, this weekend I'll have help with my kids so that will be a good time to do a trial run. thanks again!

Gabriella, Sorry you have an MG diagnosis but happy you now know what's been going on. You should be fine with the mestinon. I am since it helps me greatly.

My doc says it's OK to tinker with the dose schedule as long as I don't over do it or take too much. I started with 60mg every 4 X per day, but after seeing what that did, my doc said 30mg every 2 hours was fine and that worked better for me. Mestinon wears off quickly and it worked better when I kept the level more constant by taking more doses of smaller amount.

Some people start with a dose recommendation from their doc and find that the doc wants to raise it up a bit after the person gets to see what it does and how they feel. Talk to your doc if it seems to be 'almost' working. You might need a little more. If it makes you twitchy or gives a stomach ache, maybe you need less. Just keep talking with you doc and you'll figure out the best way it can help you.

Mestinon takes about 15 minutes to 'kick in'. It wears off in about 3 hours. If you take too little, you don't get full relief of weakness. If you take a little too much, you get muscle twitching and maybe an upset stomach. If you take a lot too much, it actually causes muscle weakness (I haven't felt that and I don't want to). Don't take more than your doc says.

You'll be OK.

It doesn't work to relieve symptoms on everyone who takes it. I hope it works on you because it really can help. It's almost a miracle when it works.

Sorry you are 'in the club'. I hope you find the mestinon works well. It may be all you need to feel really good and be back to normal. Back to normal can actually happen to you. Good luck we all need it.

I also have stomach problems. That is why my neurologist started me so slowly

I am also very sensitive to medication. I started mestinon at 60 Mg 4 times a day but now am taking 30 Mg 3 times a day. I have some minor stomach discomfort and cramping with loose stool. My main symptom of overdose is numbness and tingling of my lips and tongue.(weird, I know) Also if I take too much I feel weaker.

If I don't take my mestinon my face feels like it is sagging, my vision is bad and my body feels so heavy I can hardly move. I find the minor discomforts ar e worth it for how much better I feel. It takes time to figure out how it works best for you.

Hope you start feeling better soon. Welcome
Sandy

I take it every 3 hrs....no problems at all... Can't even tell I take it...well, I can tell when I don't take it. It is my friend!!!! I was scared at first too.

Thank you for telling me all of this, especially how long it takes to kick in, that way I can figure out what is right for me and understand how long it takes to feel it. I felt like crying when you said the "club" not because I was sad, but because for so many years I was undiagnosed and so sick and now to know I even have a club is so relieving to me. I just remember almost begging doctors to help me, one even said I was probably dying from a progressive neurological illness, but that he didn't know what it was! ack!

Thank you so much, without drugs I get the tongue and lips numbness and tingling, what ever book says that it is only muscle weakness is just so wrong. Thank you for the welcome

great to know, all these replies are making me feel so much better! I know I need it, my throat right now is so heavy and garbled, feels like a novocaine shot in there, thank you so much for telling me you were scared at first too.