Hi everyone! This is so great to find this site! When I was first diagnosed, back in 1985, I was 16 years old. Sure wish they had something like this for me, at that time!!At the time, I could not make medical decisions on my own, so after many talks with many doctors, my parents felt the best choice for me was to have a thymectomy. They didn't want to make me go through massive steroid treatments. I had been taking 60 mg of mestinon every 4 hours before that, and 180 mg of timespan at night. After the surgery, my dosage lowered.

It wasn't until I was 30 years old, and gave birth to my daughter, Camille, that my life changed...forever. My mestinon was making me worse. Then my neurologist decided to take me off the mestinon completely. What??? I was terrified. I had carried mestinon in my purse, in my car, everywhere! But I stopped. I have not had any symptoms what so ever since th birth of my daughter. She's my middle child. She jokingly tells me from time to time..."Mommy, I cured you". So cute!

It hasn't been until very recently where I have been feeling fatigued and just not myself. That's what brought me here to this website! I was wondering if this has happened to anyone else!

Welcome, Amy!

I had become completely controlled and needed no meds for a little over a year. Then something triggered me and I'm currently in a nasty 'bout. Unable to go to work, stay upright for any great length of time, difficulty walking, crisis symptoms yesterday but I got through it.

I know what you mean about the feeling when they tell you to stop the Mestinon. It was scarier than the dx! But as I'm sure you know, too much can cause the same symptoms as not enough and once you're controlled, it's all too much.

Although it seems MG doesn't need a reason to relapse, sometimes you can figure out what causes it. If you have been doing more than normal for a while, or if you have had some kind of infection or physical trauma. I'm sure you also know that while the thymectomy can put you into remission or reduce the quantity of meds you need to take, there is no cure for MG. It can rear it's ugly head again, and from what I've seen usually does at some point.

You should probably get in touch with a neuro. You may just need to get back on the Mestinon as needed, or it could be something else. No way to tell unless you have them check you out.

That is so cute what your middle child said. Kids are so awesome and sweet, aren't they?

I hope it's just some little bug causing your fatigue. Let us know how it goes and how you're feeling. Glad you're here!

Hi, I just wanted to reach out and give you a hug .I haven't experiences what you have. But have known others who had to have surgery, or went through some stressful times with family, and then had a relaps.
I believe Myasthenia is always there, sometimes in some people it will go dormit, or remission. And then when something is going on that affects either our immune system, nervous system it jars it back awake..."for lack of a better phrase".
I'm so sorry you have had a relaps. Did your neuro say what kind of treatment he/she is thinking of offering to help?
Let us know what they say.
Love Lizzie

Hi Amy,
I always thought that since MG come up due to a peculiar event, it could also vanish after another special event but it might also come back…
Life has to be taken as it comes…
Maurice.

Hi Amy,
Great to hear your story! I loved it so much i almost cried. It's nice to hear a story of hope when this condition just seems to go on and on. I'm 30 now and my husband and I are starting to think about having a child but I wanted my MG to be under control first. I really hope that your fatigue is not a recurrance of your symptoms. Make sure you get in to see your neurologist to see what he/she thinks as soon as you can.
I'll be thinking of you!
~Kathy

Hi Amy,

welcome. I cant help you sorry, I don't have any children, but I'm sure you will get some answers.
take care
Kate

After my thymectomy {in 1991} I went into a drug free remission until this past winter. Sadly I can't take any medications due to reactions but my new Neuro is awesome. Turned out I had another illness {Alpha-1 Defic} that has triggered the MG's return. Something usually always triggers a relapse. I use self mind control to deal with my MG {although I have to admit, lately not as well} go to your Doctor, but a tip here is as things happen or thoughts enter your mind write them down because you will most likely forget them when you go to the Dr. Good Luck.

Joanmarie, I always jot down little things in my calendar to remember to discuss with my neuro. I find that helpful.

I do the same thing with a post it pad and take it with me when I have an appt.