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...
I just went up on You Tube and heard a lot of MG documented stories from patients and doctors, and it was very discouraging. In regard to the people with MG...maybe these were the worst cases but it seems to have held them prisoner to being their first thought when they get up and go to bed...How is my MG doing today...How many days to my next IVIG where I feel better and how am I going to pay for my share of the cost... my life will never be the same again...Can I make plans...will I need to cancel because of MG...How is it affecting my relationships (the ones who are scared to death of it, the ones who just dismiss it and say everything would be better if you just did this or that, the ones that get angry or impatient because they think you are making excuses...and the ones that simply stop calling you). The awful side affects of the drugs and the dangers they present. Yes there were some positive videos, and those are the ones I want to hear from. Because we all need hope to copy with MG.
I like to look at everything head on and not be in denial. I like to get the facts so I can be an advocate for myself, but I am determined to stay positive and take it a day at a time. After immersing myself into so much conflicting info on the internet and hearing the voices of MG patients that are not winning the battle...I decided I am going to just stick with this forum because it is so positive and constructive with humor and hope. I will try not to talk about it outside of this forum much, other than when they ask, because they could not possibly understand the roller coaster like you guys. I am blessed to have this forum because it is so empowering, supportive and gives me hope. But outside of this forum I am going to live my life not as a victim of MG but acceptance of MG, because but it will not define who I am. MG will make me a stronger and more compassionate person who values all the wonderful people I have met across the US in the same boat!!.
I like to look at everything head on and not be in denial. I like to get the facts so I can be an advocate for myself, but I am determined to stay positive and take it a day at a time. After immersing myself into so much conflicting info on the internet and hearing the voices of MG patients that are not winning the battle...I decided I am going to just stick with this forum because it is so positive and constructive with humor and hope. I will try not to talk about it outside of this forum much, other than when they ask, because they could not possibly understand the roller coaster like you guys. I am blessed to have this forum because it is so empowering, supportive and gives me hope. But outside of this forum I am going to live my life not as a victim of MG but acceptance of MG, because but it will not define who I am. MG will make me a stronger and more compassionate person who values all the wonderful people I have met across the US in the same boat!!.
Most others just don't get it.
I too pretty much stick with this site. I like the positive attitude and humor and support in difficult times.
This is a great place to visit on a regulr basis.
Pat
keep it up
Ann
You're a great bunch of friends.
Cathi
People around me often can tell how I am improving though. I had a buddy come up yesterday to me that I haven't seen in many months and the first words after I shook his hand and asked how he was doing etc, was "Man you sound great!". Not "you like fine to me", or "I can't tell", or whatever else people can say that just don't truly understand. My speech is something that has been very important to me, and was my first tell that something was wrong as far as symptoms. It still is the biggest tell for me to remind me that I have MG.
In time, you should get better, and we all want to do that with you. So, why not just ride it out with us on this train going through the long tunnel? If the train falls off the tracks, you know we will be here to help you get it back on again...all with a hope of seeing the light at the end of the tunnel.
Just keep on coming through and sharing your stories....We understand.
BIG HUG TO YOU!
TJ