I was diagnosed with Mg 19 years ago. At that time I was on mestinon and had a thymectomy. I did go into remission for sseveral years. However I ignored my body and stopped seeing my nuerologist while I was feeling good. I never should have done that. This past year I have had it come back with vengeance. Mestinon no longer works and I am now on cellcept. I have had 4 ivig treatments in the past year and yo be honest I am incredably depressed. I am 42 years old and I feel like half a person. I cant give a hundred percent to my husband, my kids, my job or my house. I feel useless. My husband works so hard and then has to pick up my slack and my kids deserve so much more. I don't know how much more I can take. I feel like a burden. And no one understands what I'm going through. Thanks for letting me vent.--tt
pattam85 pattam85
12 Responses Sep 24, 2012

Hey have just recently been diagnosed with MG .I'm 24 and from the Caribbean. I probably had it for years had so many symptoms and every doctor led me to believe i had allergies of some sort.Recently i started getting intense symptoms right before that time of the month and we decided to go to different doctors when finally i was recommended to a neurologist and in an instant he diagnosed me...gave me a tensilon test and that was just on monday.I am currently on prednisone and mestinon.I pray that hopefully I can go into remission for a long while or possibly this MG hides forever.For me knowing what it is has helped me a lot.I have been suffering for so long and my most recent symptom was the difficulty swallowing and choking.I had a long road of not being able to talk properly...not having fun with friends....watching my life pass me by and being sick all the time.It was tough at first knowing i had something like this but you just have to take it for what it could be worse...I am trying to be happy in spite of it and i am hoping the medication works and i can live a quality life...I am also believing that it would go into remission for a very long time.Just try to laugh more...listen to uplifting music...i realized the more depressed you become and the more you give MG power the worse it gets.

hey!, you are not alone..!!I am from Botswana, a country in the Southern part of Africa. i have had MG since i was 13 (1998) i got diagnosed at 22(2008) and was on remission for some years. My doctors informed me that i cannot do a thymectomy because the thymus gland is not "visible". I also take mestinon and immuran and sometimes prednisolone. I have been on a terrible relapse since Dec 2012!almost a year now!its on and off! double vision an im generally just useless, i cant do anything. sometimes i cant even bath myself. I am so depressed, i feel like im not living. I am soooo disabled. I cant even think of getting in a relationship, i dont even know how to explain my situation to anyone, i feel like a burden. the medication makes my face look round, my ankles sore! im supposed to be enjoying my youth!


I was diagnosed with mystenia gravis when I was 9 years old . Got the thymectomy done right away . I had a very ruff childhood . Now I'm 21 n just this month I started re taking mestinon , I had a whole year of been normal if I may say . And now it's all back . Iam new at this whole sharing your experience . Iam use to keeping it all inside and always having a smile on for people . And know that I hear all this stories on how there is other people that can understand what I feel is kinda nice . It's very odd to hear tis but Iam glad god choice me to have mystenia gravis . We are people that can't be compare to no other . We are solders that have survive n are still learning how to survive this difficult illness . Atleast I see the world a whole different way and l learned how to appreciate everything and everyone around me . And yes we can be going threw this horrible crisis but it still hasn't gotten the best of us . And I wish you all well my best wishes and health .

That sounds like my story! I was in remission for 22 years after the thymectomy. Then BAM! MG makes a comeback!. That was a hard pill to swallow. (Pun intended!) :D I went into a severe depression for a while. Remember, Prednisone and mestinon both can add to that. I have learned to do what I can when I can with my kids. Its tough to tell your two year old daughter that you cant pick carry her right now. I dropped My 5 year old when she was 3. She just started slipping and I couldnt hold on. Ilearned to stop trying to be a hero that day. What I do now is lay on the ground and let them trample me. They love beating up dad and I love being able to play with them. Even if I am just being the human trampoline! You need to grieve. You have lost a big part of yourself and its only natural to mourn that loss. I am still trying to figure it all out. But I know that your kids will love you no matter what. You're mom. Thats all they want. YOU! There is no replacement for you. Even if you do have to yell wait up once in a while.

I also got Mg at 19,not diagnose until 27.I,ve seen every doctor possible before being diagnosed,including a psychiatrist.They wrote me off as crazy.At 27, they figured it out, put me on mestinon and also gave me a thymectomy.I,m not on celsept but I am on azathioprine,which is sure enough the same drug.I too feel like half a person.Until one day my sister came to tell me She had caner. My heart and soul was broken and at that time I realize how the other people around me all my life felt,how there heart and soul was broken over my health.Since that day I try to become whole and make others around me feel whole.We live this life once,and we don,t know the meaning of good health until we lose it.I had the best part of life as a teenager the rest i pretty much missed .Try to find a way to make others around us to feel whole.They have feelings to,we an tell that by there actions.Life is an experience for everyone

Hi my Avril and i am in the same boat as you are in .im 35 years old have one child and husband . I have had MG at 18 years old had to stop working and driving .
But if you try to see some good in evey day like the love of your family.
It might help you feel better .

Wow...I have to say how much I admire your coping with mg while raising a family. I was diagnosed n oct 2010. I just have to say hang in there. U r right...your family deserves the best...that is why God gave them u. Lots of hugs and best wishes.

I know exactly how you feel. I am a male and was diagnosed when I was 22, and in the best shape of my life. I have always been into sports, and having this disease really kills me in my own head. Even now as I write this, I'm having another relapse and am seeing double and it's really getting to me and if I didn't have kids, I wouldn't be writing this.

I had the thymectomy done and it didn't really help in my opinion, however, I don't know how bad I'd be if I didn't. I am currently taking immuran and prednisone, and it seems that only the prednisone works. Mestinon never worked for me. I have these flareups every couple of years, and I just up my prednisone until I can see again. I get yelled at by my Dr for going so high on the prednisone, but I can't stand seeing double. I am now up to 70mg every day.

People look at me and what I do and can't believe that I even have the disease because of what I push myself through. However, I know that I should be able to do more with my life, and if I didn't have this, I would be better!!!

I'm sorry I'm not much help to you as I'm really on the hate my body side of things right now. I know that useless feeling, and just wanted to let you know that you are not alone.

You are not alone <3 Wishing you the best

You are not alone! Other than the fact that I'm 5 years older than you, and I actually lost my job because of an exacerbation, our stories are the same! I feel like such a slacker and am depressed about the whole situation, but I try to focus on the fact that it's the disease that tries to make you feel isolated because no one really understands what you're going through. It's the wierdest disease because people look at you and think you're fine, how could you possibly be sick. Just hang in there - the good days make it all worth it.

My mother has Myasthenia Gravis and she gets depressed too. I can't imagine how hard it is for you, but you didn't pick this, it picked you. It is not your fault. Just be there for them when you can and communicate about it. I so hope you are feeling better. A stranger sends you good thoughts and lots of good vibes. Take care.

Good grief, I am so sorry. You have had this ugly disease for so long and you are only in your 40's. I am 65 and was diagnosed in January 2012, had the thymectomy, then went into an MG crisis which included a respiratory event causing intubation and feeding tube. I had 2 five day rounds of IVIG and was in ICU for 13 days - total hospital stay of 17 days. While there I was diagnosed with a paralyzed diaphragm and multi-nodular goiter. I am, as we speak, in the hospital again with a relapse and tonight is my last night of IVIG. It seems to me the Mestinon does not work as well as it did at the onset in January. I'm also on Imuran as my maintenance drug and high dose of prednisone. I've been a very active person socially and that's been nipped in the bud, plus the company I work for is not very understanding as far as managing the stress of the workplace with all it's deadlines (I'm in the finance dept), so I'm currently thinking I may have to go the long term disability route. I will be praying for you...please try to keep your chin up and stay as positive as possible. I find interacting with my friends that know I need a lot of laughter in my life is almost my best medicine.