I often feel like that too. I often feel as if people think I might be faking my symptoms to get out of work because it isn't always obvious how hard EVERYTHING is, ALL the time. I usually have a smile on my face and say I am doing okay, but my coworkers don't understand what I have to go through every day just to get to work! If I get one more comment about being 5 minutes late I am going to bark at someone because they don't get it! People don't "get" what we're going through - it's hard. I've been feeling really depressed about it too lately, though I've been spending months trying to be so optimistic. You're not alone, but please have faith that we will get though this. Feeling down only puts more stress on us and makes the symptoms worse. I don't know how to do it yet, but I know I must find inner strength and inner peace.

Have you seen a guidance counsellor yet? I wonder if you can try to work out with your teachers a way to get your work done even when you have to go home from school. Remember to make time for friends too, because you need support and compassion.

Well the crying will relieve some stress, so that is ok. You need to get mestinon again it sounds like. Have you been tested positive? If so, what does neurologist say? Surely they can explin this to your mother to help her understand.

Drink some caffeine to get you going in the morning until you get mestinon and then talkabout treatment with your neuro and doctor.

Peace,
TJ

I am sorry. I would be happy to discuss this disease with your mother. We all feel that way. I had to quit my job. One day I could get up I am fine and the next day I can't do my house work. One day I am happy and the next I am not. Your mon needs support from a social worker. This disease is a roller coaster ride. If I get upset it is different than when I ddin't have the disease. I stay aggitated longer. We look normal so people expect us to be normal. Apparently there is a teen support group for with MG and they may hve tips to help you.
I am not defending your Mom believe me. But the only thing harder than a sick child is 2 sick children. She needs help and support from a person or group dealing with this disease.
And yes, it is understandable why you feel depressed. Also You are there are services for students with medical needs. Your councelor or principal knows of these.
Ann

And yes your Mother was right ....
You were using your symtoms to get out of school.That is what your body needed at the time. Following a set scedule without rest periods is difficult with MG.We have to use ( I prefer the words listen to ) our symtoms to monitor when we need rest.That is what we have to do to keep as healthy as possible... let alone sane. We have to use our symtoms to keep us from getting too weak to function.
A postive way to hear it from your mom would have been....
Honey... I am glad you listened to your body to stay as strong as possible.
But unfortunately people aren't perfect.
Take Care
Ann

We have all been there, I would recommend talking to your school about getting a 504 plan, it is a specialized plan that will help you and your teachers cater to your special needs, for things like extra time to get back and forth from classes, emailing assignments when you can't make it to school, and stuff like that.

Brianna,
Why are you off the Mestinon and can you get back on? This disease has better and worse times, but seldom just disappears, although some have had long remissions (but usually after thymectomy or longer treatment than yours). School is exhausting and stressful on many levels and may require more medication than the summer for you. Hoping you get to feeling better SOON.
b.

I had to leave school this year due to my symptoms and this was before my diagnosis so you can imagine all the people talking about how I was being "lazy" and "irresponsible" and "making things up". And even now, people will get frustrated with what I can't do. It will always be difficult to explain to people who haven't suffered from MG just how hard it makes the most simple things and how self conscious you feel if your eyelids start dropping or your ankles give way. The other day I forgot my mestinon while I was out and I started to get double vision and I couldn't help but just burst into tears because it is the worst feeling. It does sound like you should be back on mestinon though if your symptoms are returning.

Hi, I know how you feel I have been struggling myself lately . I hope that you have found a good doctor. The key to living with MG is consistency and balance. Once you find you balance in your medications and physical ability it is important to be consistent. As I am finding out now the hard way. You are young so you have youth on your side, It helps to keep a journal so that you can accurately remember the day to day stuff . Hopefully you will find a good balance and be able to live a normal life.

Hi Brianna,
I have been thinking about you and wondering how you are doing this week. We all understand about feeling tired and frustrating and am glad you came here to vent:)
Do you think your mother would become a member of this support site? We would love to answer any questions she might have about symptoms and how we handle them. There is also a support group for parents of MG children on yahoo that she might be interested in joining.
http://health.groups.yahoo.com/group/MGchildren/

(If your mom doesn't use the computer much, maybe you could show her how to join the groups)

You can both go to the MG Foundation Association site. It has good information.
http://www.myasthenia.org/

There are support groups in Florida.
http://www.myasthenia.org/LivingwithMG/MGFAChapters/Florida/SupportGroups.aspx

There is another support group here on Daily Strength for young people with MG that might also be helpful for you.
http://www.dailystrength.org/groups/myasthenia-gravis-for-young-people

I hope you or your mother call your doctor to get you more mestinon. It is important to see your MG doctor regularly. Many of us see our MG doctors every 3 months.

Wishing you the very best!
Hugs,
sherry from texas