NeuroTalk Support Groups - Actually have GOOD news!!!! Yay!

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Actually have GOOD news!!!! Yay! (https://www.neurotalk.org/myasthenia-gravis/184787-actually-news-yay.html)

Actually have GOOD news!!!! Yay!

After 5 loooooong years of dealing with this awful disease, my neuro thinks I'm in REMISSION!!!! I'm so happy! Granted, I still have to deal with all of the side effects of the cyclosporine - arthiritis, osteoporosis, brittle bones and the loss of 6 in. heightwise, but I feel so blessed! Oh Lord, the weight! I'm stuck @ 170 lbs, which for a 4'11" woman is HUGE, but with the lower meds, I'm HOPING to lose it, but if not, I'll be fine, so long as I feel like this!

It has been a battle. I've been very, very close to meeting my maker (MRSA was the worst), but I finally see light@ the end of the tunnel!:)

For a while I will still be getting IGG every month, but it will be tapered off and hopefully I will only be on IGG when I need it!

The ONLY positive of having to deal with this is meeting the people here. Everyone has been so amazing, so kind, so hopeful. I don't know what I would have done without it, truly. I have been truly blessed to meet so many wonderful people.

*admin edit*

I still remember the first time I found this site! It was amazing! People who UNDERSTOOD what I was going through! People who could relate, people who were just as scared as I was; it was awesome!

I still log on and read everyone's posts. I'm just quiet now.

I hope this post finds all of you happy! I still pray for everyone and hope you have a great day/week/year.

Big hugs!
Erin:hug:

Quote:

Originally Posted by erinhermes (Post 962074)

After 5 loooooong years of dealing with this awful disease, my neuro thinks I'm in REMISSION!!!!

:circlelove::Dancing-Chilli::circlelove::Dancing-Chilli::circlelove:

Brilliant news Erin xx

Erin, I am so happy for you and it gives me hope!

What part of your treatment do you attribute to your remission?

kathie

I was out the door therefore quickly answered this post from my gut this morning!

Going into a remission is a really BIG DEAL, Erin!

2 years ago I resigned myself to the fact that I may never again be able to lift my arms to do simple tasks.

For whatever reason and for however long a remission may last it is always a reason for celebration.
Even one day with symptoms better than the day before is a´miniature´remission worthy of gratitude in my book!

I am now in complete remission from 5 years of myasthenic symptoms
(and I wont let a pair of deltoids that feel ravaged by a tornado spoil my party! -although some other things almost did)

I hope you are able to enjoy this lovely time and that the other symptoms behave themselves accordingly.

Take care of yourself at this precious time :hug:

Praise the Lord! Although I am rather new to this site I am extremely happy for you. Thanks for sharing the good news, Erin.

Interested

great news!!!!! so happy for you!!!!

Erin, I am curious. Do you feel as good and as strong as you did before MG? Are you back to doing all your pre-MG activites with all your pre-MG stamina?

thanks
kathie