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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/ Myasthenia Gravis Support Group

Helpless ,scared , and alone. What now?

Love_is_kind
Love_is_kind

Hey!  20 years old and was just diagnosed a little over a month ago but had been dealing with the symptoms for about 8 months before! It's been really hard for me lately physically and emotionally the past few days I've been really depressed and angry feeling like everything has been torn away from me I can no longer live up to my own expectations. I could really use a friend , someone who will listen and understand what I'm going through! My everyday symptoms suck I'm tired all the time I can never catch my breath all the small things that should be easy for me are a hassle like gosh I'm 20 years old and I feel 90!!!! Help me please

johng1208
johng1208
I guess I don't have it as bad as some of you. I don't (yet) have any trouble eating or swallowing. I get tired easily and my eye lids droop a bit in the afternoons. I do know I need to change my diet and I'm getting good support from my family regarding my food choices. I do get depressed from time to time, but I think I manage that fairly well when it happens. I've actually gained about 5 pounds since I've been back home. My biggest problem is dealing with the heat of the day. I live in the tropics and my work is outside. I try not to stay in the sun for too long. Just glad I found this support group!
Keepsonablessin
Keepsonablessin
I didn't cry all day today!
johng1208
johng1208
Hello everyone! It's been over a year since I looked at this site. I have been managing my MG as best as I can. When I saw my doctor on my annual visit last year he increased my midday dose a bit because of the eye twitching in the afternoons. I have recently found that two of my friends also have MG so I am now talking to them about it and we are a support for each other. I believe I have finally accepted the fact that I can no longer do the things I use to do, but I'm adjusting to things - gives me more time with my grandchildren!
chuckie1
chuckie1
Just remmeber that you are not Alone We are here for you!!
The one thing that helped me the most was learning all I could about this and learn your body!! Talk with your doctors and do not take no for an answer , Hang in there we are all with you!
Chuck
piamaria
piamaria
I am so sorry! This disease is rough especially at first. I was misdiagnosed at first as well. I'm sure most of us were. I have been told that it was because I was depressed. I persisted until I found a doctor that would listen. I had a thymectomy, which helped for awhile. I was in remission for 4 years, then it came back. I've just started IVIG treatment and let me tell you it has made a world of difference. I haven't fallen in a week. I'm not as tired and I haven't choked once! I can't remember feeling this good in a long time. But I had to find the right doctor to get here. I was told because I was antibody negative that it probably wouldn't work.
The right doctor is the key. You need one who will listen to you. You know your body better than anyone.
It will get better. And you will begin to know the people who really want to help. And you will learn to ask, because sometimes you have no choice. It is hard for people to understand how one minute you are ok and the next you aren't.
But I can also tell you I have made some of the best friends since being diagnosed. My relationship with my husband and children has grown. And my faith is God would not be where it is today if I didn't have this. I know He is always with me. I also keep a gratitude journal which really helps me remember all the good things I have in my life. Some days it is hard to find the good, but I usually find something.
Hang in there! Once your meds get adjusted and you begin to know your limitiations, it will be more manageable.