Well I called the Dr and agreed to go back on mestinon.. I went to the post office today and then to buy butter, well my vision got so bad I had to come home and send hubby out to the store. I am so ticked off right now. Not having taken the mestinon for over 17 years this is hard for me to admit I need it.

As those of you who know me I am super sensitive to medication and am scared to take it again but it is that or not be able to go out. If it doesn't work than I may even cave further and try the IV IG... heck I don't know.

Well thanks for letting me rant.

How frustrating, I don't blame you for being ticked off. Going backwards is hard and so is feeling out of control.

Maybe the mestinon will go okay for you. I hope so! Did you have problems 17 years ago?

Ally

Oh sweetie, I am so sorry, but this is probably just a little "bump" in the road!
I bet you will be feeling great in no time!
I've never actually been in remission b/4, so I have no idea how it feels, but I'm sure you're really upset after 17 glorious years of it!
What does your doctor say about all of this? Did you have a thymoma?
How are YOU coping with this?
Please feel free to contact me ANYTIME if you need to talk...I am here for you!
Love,
Erin

Hey Joanmarie,

You just go ahead and rant all you want!We are all in this together!

I'm sorry that your symptoms have returned this year. I can tell from your previous posts that you have fought this battle by trying alternatives to taking meds. Maybe alot has changed with your body and it can tolerate the Mestinon now. I will say a prayer for you tonight for that!

Remain hopeful that alot has changed for the better in 18 years. Wow that's a long time, I sure hope I can experience that after my surgery.

Just remember, we are here for you!

Hey Joan,

You rant all you want! I'm so sorry that the MG's rearing its ugly head again, but hopefully the other girls are right, and the mestinon wont be so bad this time...I wonder why, after so many years, it's come back? This disease is so crazy! Some people seem to get it AFTER having their thymus removed ('cause of a thymoma), and some people get rid of it after having the thymus removed...

All I hope is that you're feeling better very soon...My thoughts and prayers are with you...

P.S. Have they ever checked to see if your thymus has grown back?

Nicky

Can your thymus grow back???

Stephanie,

Yes, it can from what I have read. Might take many years, but if some cells were left behind, it is possible. I have never read the per cenatages - - maybe some one here knows.

Sue

I've heard a lot of people say yes, but I seriously doubt it... thymomas are very prone to recurrence though. If Thymus cells are left behind from a thymectomy, and you have cancer cells (thymoma) it is quite likely that they will grow back.

The thymus actually degrades to just fatty tissue (normally) shortly after puberty. We "lucky" few keep the thymus around longer than it is needed. I don't think it is actual Thymus tissue regrowing.

Of course, I could be very wrong... this is just my belief based on my understanding of the Thymus, thymomas, etc.

Joanmarie, I can only imagine what it's like to have to try a drug you haven't been on for awhile that might make you really sick. Maybe you could try the Mestinon syrup. That way, you could start out with a very small dose and work your way up. Maybe your body would get used to it better.

I know what you mean, most days I feel like a hermit. And crabby.

I hope it all goes well. You need to feel better.

Annie

Im with Annie on this one, the mestinon needs to be started very gradually so that your body can get used to it,

Im so sorry that your MG is starting to flare up again, it seems so unfair.

Hang in there and you rant away!

Love
Rach