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...
"There is no typical case of myasthenia gravis but, rather, this entity remains a clinical diagnosis that relies on a well-taken history, adequate examination, and appropriate interpretation of laboratory tests. To miss the diagnosis of myasthenia gravis is to cause the patient social, psychological, medical, and economic suffering."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2625490/
I do like to be positive most of the time but I also think it helps to share the struggles as well. On March 30, 2009 I left a job on temporary disability because the fatigue was so bad that I couldn't walk or think while waiting on customers as a designer.
I have spent 4 years with friends, family, and doctors thinking that I was faking my ability to work. Surely someone with my abilities can work somewhere they thought. At 57 years old now I have been without work for 4 years. I rent a 180sq ft. studio, live alone, had to sell my car to pay rent and traveled a long road of loneliness and isolation. My landlord has only charged me half of the monthly rent for 1 and 1/2 years waiting for my fed. disability hearing.
Why in the world would people choose to think that someone would lie in bed every day after having raised 2 wonderful children, excellent career and had an A type personality? The answer lies in the doctors not validating that an illness existed able to cause this level of
fatigue, therefore causing undue stress.
Now the positive side, I have become stronger as an individual, learned to educate myself about medicine, and learned to always have an open heart when someone looks homeless, ill, or just needs help.
Anyone else felt like this?
Marina
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2625490/
I do like to be positive most of the time but I also think it helps to share the struggles as well. On March 30, 2009 I left a job on temporary disability because the fatigue was so bad that I couldn't walk or think while waiting on customers as a designer.
I have spent 4 years with friends, family, and doctors thinking that I was faking my ability to work. Surely someone with my abilities can work somewhere they thought. At 57 years old now I have been without work for 4 years. I rent a 180sq ft. studio, live alone, had to sell my car to pay rent and traveled a long road of loneliness and isolation. My landlord has only charged me half of the monthly rent for 1 and 1/2 years waiting for my fed. disability hearing.
Why in the world would people choose to think that someone would lie in bed every day after having raised 2 wonderful children, excellent career and had an A type personality? The answer lies in the doctors not validating that an illness existed able to cause this level of
fatigue, therefore causing undue stress.
Now the positive side, I have become stronger as an individual, learned to educate myself about medicine, and learned to always have an open heart when someone looks homeless, ill, or just needs help.
Anyone else felt like this?
Marina
Anyone struggling.... I feel so bad for you.
I remember the days I couldn't breathe. I remember the days I couldn't walk or eat.
I know there are docs who don't understand or even know what to do.
I had the best local neuro there was and he didn't know what to do for me.
I then went to a large university doc who specialized in neuro muscular diseases and had treatment. It took years to get strong. But I now am strong.
We have to go to the best who has experience with MG or we drown.
There is a new life ahead.
I am now grateful I can change sheets when my kids are coming home and make potato salad. I was shocked that those two things ended up being so important. And I was shocked I was grateful I had a diagnosis.
We all can get there.
Ann
I went to a well respected teaching university, but that did not guarantee good treatment. My local neuro did not know what else to do for me and trusted that they would. Instead, they were fixed on disproving MG, and since they had to uphold their reputation, they had to have a diagnosis, so it fell to anxiety and conversion disorder.
I really think my friends and family, although they didnt necessarily verbalize it, felt the same way. My local neuro never turned his back on me , though, and I got my diagnosis of Lems. I feel that it was negligent on their part that hey did not even consider or test for it.
Ann it is so true, the simple pleasures such as cooking can mean so much when finally able to do it. For me it is cooking or watercolor painting. I need to nourish my body and soul. Thanks for the encouragement "of a new life ahead".
My primary physician looked at my lab test (which my wife ordered online) and gave me a prescription right away. My symptoms were gone within an hour - for the most / worst part that is.
Marina
My wife is worried, but my dad doesn't seem o take the condition serious enough. "Hey, it will be good for you to lose some weight". Thanks Dad.
I am a 53 year old man and all I care about is my children. They are my responsibility. The uncertainty drives me a littlecrazy.
Then finally, my eyelid drooped, got double vision and an ophthalmologist decided it was MG and a confirming blood test convinced everyone of my medical people. The relief that I really had a disease and that there was treatment that might work was amazing. It takes a while to start blaming the disease rather than ourselves.
So when my primary bothers me about getting more exercise and losing some of the prednisone weight, I say "yes, it is too bad we didn't catch that I had MG earlier so I didn't have so many years being told to do something I couldn't do" and then she apologizes and we go forward.
Good Luck
Such a fine line to walk, figuratively speaking..
And yes, Marina, have SOOOO felt like that...and had people make weird comments about the weight loss, etc.
Well wishes to all, and so thankful for all the support here...
All I can say is thank God my eye started drooping in Dec. 2012!
Marina