Hi Joanmarie,

how frustrating for you to be having to take mestinon!!!! I hope it works for you and doesn't give you too many side effects
take care
Kate

Joanmarie,
Sorry for the setback. Take care of yourself and keep a positive attitude. This will go a long way during your struggle! We are here for you, so rant all you want and we will be supportive!
Hugs,
Simon

Thank you everyone for your kind words I believe the reason it has come back is because last Oct I was sprayed with an ABC fire extinguiser and after breathing it into my lungs my body went crazy. As for the thymus returning that is possible as my thymus was spread throughout my chest and back then the Dr did say if he didn't get it all it could return. I have been in and out of the hospital alot since last Oct but I don't remember if they checked to see if thymus returned although I have had a chest cat-scan they were more interested in checking the lungs, I will have my Dr. look it over again. Once again, thank you for being here

I have always been really sensitive to most meds too - - and have to careful whenever I start something new since I'm never sure if I will have a reaction.

When I was given a 'test' dose of Mestinon the first time, I felt like I had drunk way too much wine! It took about a 1/2 hour to get rid of that feeling, but then I felt great!

Initially they said it was too bad I couldn't take Mestinon! I argued to try a lower dose ... and it has worked for three months now!!

I literally have two bottles -- one with 60 mg pills that I have quartered and one with 60mg that I have halved. I 'know' when I need which dose by how my body feels. And it's a bit of a pain to have to take the meds so frequently, but I have had NO side effects (and no 'wine' brain!).

For me, I feel like my body doesn't tolerate 'normal' doses of any drug - - I mean I only take one ADvil for a close to migrain headache! Maybe this would work for you,,,,hope so.

Sue

The Dr. put me on 60mg 4 times a day, {I used to take 120} but I did like Sue and broke it in half, it worked and well to be honest today I took a full tablet and it worked even better I forgot what it was like to look at something and not lose focus! I can tell when it is wearing off because my vision starts going bad and fast. The cramping is not so bad either I was so afraid it was going to be like before but since I am on such a low dose it is good

Thank you all again for the support!

Oh Joanmarie! I am sooooo happy for you!

What fabulous news!

I have a sneaking suspicion that REMISSION is right around the corner for you!

Love,
Erin