[Joanmarie63]

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.

[bluesky]

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

[erinhermes]

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

Originally Posted by Joanmarie63

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.

[JCPA]

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!

[Nicknerd]

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

[AnnieB3]

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

[rach73]

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

[redtail]

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

[TxSimon]

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

[Joanmarie63]

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