Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Rebecca-Medina 04/10/2012

Hello everyone... I am overwhelmed by the response and concern from all members of this support group. Thanks to all who have expressed concern, well wishes and support as welll as recommendations. After meeting with the team, they recommended to continue with prednisone, imuran, They added mestinon over the weekend, as I had discontinued with it due to almost unbearable stomach pain and other discomforts which I am sure all of you are aware of. In addition, an antidepressant. I am on my way to an acute rehab. Plasmapheresis was discussed almost daily until the weekend and it was explained to me that the risks associated with the catheter insertion as well as the short-term benefits is why they decided not to go with pheresis. I am so scared that once i start rehab or the day I return home to my very active family (three boys, 12,9 and my baby who turned 1 on Good Friday) that i will relapse, and if I do... then what... another 12 day stay???.... So I am looking into getting a second opinion once I am discharged from the rehab hospital.

Again, I appreciate all of you.

Thirteenblessings 04/10/2012

Hi Rebecca, this is the first post that I have read from you. I just want to say that you are a very strong girl, weather you believe it or not. I know that you have a lot on your plate and sometimes it feels undoable, but you have done it, and are doing it, and better than before. Just take one day at a time, and move forward. You will be blessed for all that you are going through. And your kids will too. Believe it or not they are learning and seeing that adults have hard times, but they don't give up. I know your are surely scared, But God and many others in your life will be there to help you. It is hard to ask for help, and that's something that you are learning too. Sometimes we just have to. I will be thinking of you and praying that you have people near you that are in tune and will respond to your needs. It's going to be ok.

Sarah100 04/10/2012

Just a hopeful note, the Mestinon really messed up my daughter's stomach until she went on a low dose of Luvox. It helped a lot to calm her GI symptoms.

snowbeltfolkie 04/10/2012

Whew!
You are one tough lady!
Thinking of you - and your family too.
(Praying too, if that's all right with you.)
- Ross

cgreens 04/10/2012

Good luck and I think I speak for everyone in saying that we allappreciate you too!

txkiki53 04/10/2012

So agree with Ross, one tough lady... hang in there prayers for better days for you.
annette

jeanniea 04/10/2012

Hey lady,

It seems like such a battle for some of us here to get the right treatment. I hope some unexpected something happends for you soon to manage your symptoms better.

I really pray that for you.

Hang in there and keep talking to us here. Much support here .

Hugs
Jeannie

deleted_user 04/10/2012

I hate this horrible disease. It is bad getting it at age 66 but with my family raised and and being retired life is less demanding. You are in my thoughts.

catladyme2 04/11/2012

Sending prayers and strength your way.
Gail

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