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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Feeling weak and very down

briannab83
briannab83
This past week has been horrible for me. Last week, I collapsed while trying to get on the bus 2 days out of the 4 I went. The other 2, my mom had to take me off the bus and drives me to school now. Getting on the bus makes me so nervous, because I have no idea what will happen. Its so embarrassing! But I still have to get up stairs at school, and I can barely get up the 14 stairs. Everything is such a struggle. It's hard for me to get up the stairs without crawling, and even walking around is difficult. My symptoms haven't been this bad in 3 years! I tried telling my mom, but she thinks it's because I'm not active. I don't know what to do, I feel so lonely, and I need someone to understand. My weakness is getting worse, and something just isn't right, I used to be on mestinon, but I only had 6 refills, and when I was on it, it really helped. I don't know if i should go to a doctor or what! Please help, it's so hard to deal with this everyday. ):

- Brianna
annkemp
annkemp
oh mt
How old are you
I cant remember your situation.
Please have your mom call me if you wan t.
I will be happy to snd you my phone number. You may wan to have her read up on mG.
You need to have someone hear you
How can we help????If you were on mestinon then someone obviously thought you needed it.
briannab83
briannab83
I just turned 15 in august. We went to a specialist back in 2010, and was given mestinon, but never got a referral or anything else for a prescription. I've had MG since i was 11 after I got weak and collapsed on my other middle school bus. I just need some advice, and comfort really. (: I'll try to have my mom call.
carolela
carolela
Brianna, You need to see a Neurologist, who can get you proper treatment. If the Mestinon is working for you, you should be taking it. The weakness is diffinitly from the MG. Tell Mom to get you to the Doctors. Good luck!! Hang in there and know we are all there for you!!
Carole
deleted_user
deleted_user
We all have these setbacks. The good thing is that most of the time things get better, or life would not be much to look forward to. I adjust my medicines, and try to think about things getting better while treating myself to something nice--even if it is a lazy day at home. Today it is watching football with a dish of popcorn.
Good Luck!
deleted_user
deleted_user
Hi Brianna

There is probably nothing wrong with your fitness level you most likely just have muscle weakness that needs treatment - no amount of will power or exercising will help you get up those stairs if its MG! MG can fluctuate so you can have good periods for a while and then crash. You sound like you have a good reason to go back to the doctor and discuss what has happened. You recognize those symptoms better than anybody else does. If you cant let your mom read these answers then just tell her that you think it is very important that you pay a visit to the doctor again since what you had when you were taking the Mestinon refills has come back again.

Let us know how it goes as soon as possible :)

Calmday
briannab83
briannab83
Today, I went to school and could barely walk. My mom signed me out, and we're going to the doctor today at 2:20. I possibly could have high blood pressure though. I'm glad my mom is taking this seriously. It sucks that it has to be like this. Thanks for the advice, you all are so sweet.
deleted_user
deleted_user
Oh, I am so sorry. I'm glad you are going to the doctor again. It's good to keep connected with someone who can help you with your symptoms.
cgreens
cgreens
Do not hesitate to have your mom contact people from our group or come to the group here and seek advice as you have. Ann has offered her phone number and I will do the same. If mestinon is effective for you, sounds like MG. You have to take treatment into consideration, this isn't going to go away quickly. You could have this for the rest of your life, but it will get better. You just have to get treatment and mestinon is only a crutch to help you along. I hope you meet up with a neurologist as doctors in general are not really qualified to treat this condition.

We understand what you are saying, how you are feeling, and what you are going through. You are not alone.

You have so many years ahead of you. We need and you need to be much stronger than you are right now. You will be...Please keep in touch and let us know what is going with you.

Best wishes to you. (feel free to message me or have your mom as well)

Troy
sharonmartin
sharonmartin
my sweet girl i agree with what everyone has said-----please know this is always a place you can come to----------has blood been drawn?--------have you seen a neurologist at all?--------wish i could give you huggables right now.-------sharon
RosieSoaring
RosieSoaring
Hi Brianna! I am so sorry you are going through this!!! I was just recently diagnosed at age 59, but believe I have had MG since I was 9 years old. I can't add to what others have shared except to say that I have been where you are.

There are people here from Florida who might be able to refer you to a good MG specialist. I hope you get the help you need so you can get on with your young life!!!

Hugs,
Rosie
deleted_user
deleted_user
I am Rosie's Mom. I understand what you and your Mom are going through. Rosie was 9 when the weakeness started. She missed most of 4th grade and her senior year in high school. In Jr. high she had another episode with remissions in between. The doctors back then thought it was all in her head, but now she has a diagnosis 50 years later. With a good neurologist you should be able to get help. You really need a specialist who knows how to deal with this. Rosie has been fortunate to have access to a very good doctor.
Cabbage7
Cabbage7
Brianna I agree with everyone. Please make sure that you go to a Neurologist who know about mg. I have been where you are now. I
was diagnosis in 1983. You are so young and with the right treatment.
you will be running to your classes. God bless you and I hope your mom will learn more about MG.Cabbage7