Myasthenia Gravis For Young People Community Group

This Group is for young people with Myasthenia Gravis. For young people with this condition (I like to say condition instead of disease) we all know its hard and very frustrating, you all know what its like to have mg (myasthenia gravis) and you all need to know there are other young people with the same thing! Come join the Group! We'd love to hear your stories,...

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Brain & Nervous System
/ Myasthenia Gravis For Young People Support Group

Girl Talk (between the young people)

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(may I say that I did post this in the general MG forums, but felt I'd get more of a response perhaps if I posted here)

This may sound a little materialistic and silly to other members but as a 19 year old girl with this condition it is bothering me immensely since I was diagnosed with MG this Summer. I suffer mostly from fatigue (I have never slept well so this doesn't help at all...) but my legs and walking are most hard on me.
Will this condition EVER die or go away?...Or am I stuck with this forever?...because I WANT so badly to wear those new 6inch platform heels my guy got me to parties and his premiers and I want to be able to jump around like a crazy person at gigs. I'd love to go back to doing ballet again as well. But all this is of course very hard when I find it hard walking up and down the steps of the London tube stations...

(-SIDE NOTE: I find it harder walking downstairs that up? Is this normal? Its like the tendons in the back of my knees feel like they're about to snap and a lot of the time I have just dropped to the ground because my legs have given out when I've bent my knes to put my foot on the nexxt step down. it's scary when I'm out in public. I have to have someone with me and this condition makes me needy and not a lot of people always have the patience or understanding to deal with it)

I am so depressed with my condition. I feel that I am attractive and I'd like to make the most of the way I look at my age by wearing heels and going out more etc...

I know there's a lot I've talked about here that's why I'm just opening it as a general discussion. I need advice on what to do in order to strengthen my legs because I feel as if I just cannot carry on like this.

Clare-Alana
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Hi hun, trust me! i think we all wanna wear those heels again!! i miss beautiful looking shoes too and jumping around like a freak at the clubs :(
im forever telling my friends to slow down when were out shopping or dancing and stuff its soooo frustrating!!
Im 22 and i had that gland taken out of my chest last year but then i got pregnant after my operation which sometimes makes your syptoms come back so im not 100% sure if it has worked yet but it feels in a way it a little bit has.

Do you take mestion?
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Hi girls! I'm new to the site but have had mg for about a year now. Its never really affected my legs so much although i can feel it is beginning too (i can walk fine but if i want to cross my legs i have to physically lift one leg over the other) although really its mostly affected my mouth and speach. I know what you mean about just wanting to go out and have fun with your friends, due to the condition i find it physically hard to laugh or smile properly as its too much of a strain. Especially as i used to be the 'funny one' whereas now im trying to avoid any situations where i have to laugh or smile in public or even have to talk for great lengths of time (also used to do lots of public speaking). What makes it harder is last year i got my dream job of becoming a flight attendant, just before the symptoms really started to kick in (at first i thought it was the stress of training) but then they didnt go away. Ive really struggled to make friends at work as a result and feel totally isolated. theres even a boy who ive liked for a while who keeps inviting me up to see him but im too embarrassed, cant even pucker my lips to kiss someone! really feel like at 21 ive had to put my life on hold. This is also the first time ive spoken to anyone about my mg other than my mum or dr!!
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Hi everyone:) i just made an account and all of your stories are so touching!! Im a little younger than you guys (15) and i was diagnosed this summer as well. MG is really effecting everything for me like school and dance/cheer-leading. I have been benched (which is the coach telling you you werent good enough to perform) from 2 out of the 4 dance routines we do in front of the whole school. My coach and the team captian isnt really understanding my condition and that it isnt that im being lazy or just getting tired, i REALLY cant do it!! I am constantly getting yelled at by the other girls and told that i dont want it enough which is really upsetting to me :( i really want to raise my endurance, bt my fingers are getting tired just writing this. It has also made me less social since i cant smile or talk well.. i have been told by many people that i look kind of awkward when i laugh because i dont smile when i do. I really am excited to finally have people to talk to about this!!! please friend me if you would like(:
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I have found that wedges arent as tough on me as stilettos. The strain isn't as bad on my hips and I fall alot the way you have.
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wedges are a definate!!! or any type of shoe that can really stick to ur feet
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Have any of you tried having other treatments other than your daily meds like IVIG or plasma Pheresis ? These treatments help with your strength and make life easier and manageable!
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Hi, I'm new to the group/site, but I'm 18 and I've had MG since I was 3 :( Technically it's diagnosed as ocular but everybody including doctors know it's probably througout my body. I discovered this past winter that my boots were too heavy for me to pick up and that's why I was dragging them behind and walking so weird. I always just assumed that it was a weird habit. . But I guess that explains why when I'm having good days I can walk in my favorite heels and but randomly on other days, it's just too much. I never connected any of it before.
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I'm new to this site as well. I was diagnosed with MG February 2013. Now I am 17 and going into my senior year of high school and it is KILLING me that I can't smile or walk around amusement parks with my friends. I skipped winter formal, turnabout, and my junior prom all because I'm so embarrassed that I can't smile well. I feel like all my friends' lives are moving forward and getting better (dances, boyfriends, college, etc..) and I'm stuck in some bubble. I had a robotic thymectomy 4 weeks ago but I still don't see any significant results. I just feel so tired and worn out all the time and I feel like I'm wasting my senior year. My parents and my friends, although supportive, don't understand how frustrated and depressed I feel. I had to quit tennis and running which was normally how I relieved my stress and frustration. I know it may be silly, but I really want to be able to take my senior pictures, go to prom, and not feel tired or embarrassed that I have trouble talking or smililng or running around. I miss feeling energetic and pretty. It's great to come on here and see that I'm not the only one. Stay stong everyone!
Annie128
Annie128
I, like most of you am also new to daily strength and this is exactly what I was hoping to find. I have so much trouble smiling and talking and laughing. My friends say i look like I'm going to burst into tears when I laugh when really my face just can't smile correctly. And it's just so mince to see that I'm not the only one with these struggles. I too gave up tennis and as a 16 year old going into my junior year am also concerned about prom photos etc. I get really down sometimes but for the most part I am a happy joyful person and it pains me so much that I can't wear my happiness on my face. I got the thymectomy (transsternal) at the beginning of June and I can't say having the scar is easy. I'm just not ready to show it to the world so I have to constantly keep it covered. Plus I've been taking prednisone for about two months now and have a puffy face, mood swings, increased hair growth, and I am slowly but steadily gaining weight. I've always been such a confident person but suddenly my confidence is shaken.. I always believed in embracing and loving yourself but I know feel entitled to being unhappy with myself because mg has made me this way. Some days you just want to feel the way you did when you had no clue what mg was and you were so happy carefree right? I'm not much of an advice giver but if anyone wants to talk I'm here so feel free to friend me
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Hey guys, I'm 21 now and coming back to this discussion to tell all you lovely ladies that I've had my up's and downs with MG, but I just had a thymectomy 5 weeks ago and am doing well xo I hope everyone is finding their condition manageable and that you're all well <3