You know when we face change in life we all need to make adjustments, change our expectations and learn about the 'new you'. Dealing with any condition can take its toll both physically and emotionally, especially when we are younger. 20 is a young age to have to deal with a life changing issue. It want that long ago that I felt that sense of invincibility and that I could do whatever I wanted. Well that changed and I had to adjust. The good news is that we all grow and become stronger through challenges and adversity, without them we wouldn't learn as much about ourselves and about those around us. Overall with MG once you get the meds sorted out for what works for you, you will do better, not perfect...but since when is life perfect. My simple advice is to work closely with your doctors to setup what treatment plan works best for you and then learn to slow down and simply accept that your expectations need to change a bit and finally learn to reach for help from friends and family. I'm sure many here can echo these statements and many with other conditions besides MG echo them as well. There are no guarantees in life, but remember things happen for a reason. I wish you the very best and please keep posting here as this is a great group of folks that also deal with changing realities and adjusting expectations. I am sure that you will do fine in time.

Hang in there

Joe

Thanks so much Joe! Just for responding that's enough to make me smile. Much needed

I am so sorry you are dealing with this, at age 20 I can only try to imagine what that is like. Please remember you are not alone and yes there is hope for improvement. I hope you live in a larger urban area, so you can connect with people in person, who actually know what it is like.
Make sure you ask for and accept help, it is one of the hardest things to do, but there is no shame in doing so. Let others do some of the heavy lifting, so you can use your limited energy for pleasant things.
Very big virtual hug from Canada

Maybe we can take the journey together I was just dx with MG on 9/2/16 after over a year of misdiagnosis and being told it was all in my head. I just graduated with my Master Degree and felt like I was on my way to endless opportunities and touching many people lives for the better. I refuse to let MG define my potential and so should you. It changed my life as well but not for the worse for the better. The doctor put me on medical leave for 90 days until we can develop a good treatment plan. I actually have to sit down and relax because my body right now is weak and I'm moving slow, lol , so I had to take time with "me", and learn to enjoy life again instead of the rat race of work and doing for others. So keep the faith !!! God does not give us more that we can handle!! I will be checking for your post so we can keep each other lifted and inspired. MG is just a hiccup right now that will either go away (remission) or we will learn to control and live full lives as there will always be hiccups in life. Have a Great Day! I hope this post inspires you on you MG journey.

Sorry you are having so many problems. Life is not fair.
The good news is that most folks who get MG do figure out a treatment plan and it works and they can get on with their lives--not completely normally, but decently. The first year is the hardest as we try to figure out what treatment works, and to get through each day with the problems.
Get a good neurologist who has much experience with folks with MG (a big clinic is best), and then figure out how to work with the doctor and the doctor's staff -- nurses, office people etc, so you can get answers when you need them.
Read up on what other folks are doing, be very persistent with your medical team, ask lots of questions to them and to us, and remember that it will take some months to get better. I took Mestinon and prednisone and in about 5 months was feeling better and functional. Of course both mestinon and prednisone are quite annoying with their side effects, but I wanted the fastest path to improvement that didn't tie me to a hospital (IVIG or PLEX blood treatments are often quick to give improvement, expensive, but can take a week every month or two as they have to be repeated).
Treatment does work decently for most of us. Since I joined this group in 2012, scores of folks have come here first diagnosed, got things figured out, and gratefully left to continue their lives.
Good Luck Russ

You guys are giving me so much life right now! The hardest thing has been trying to explain to others what I'm going through without feeling like a pest .I feel so needy all the time! It's gotten to the point where I won't even say when I need something or feeling a kind of way cause I don't want to annoy people. And Quen i was also misdiagnosed for about a year and ignored until I went into a very bad crisis losing the function of pretty much my entire body including respiratory I am also on prednisone and mestinon and I really hate the side effect I'm hot all the time , irritable I'm turning into a whale!!!! Lol don't even get me started on the pain in my back and stomach along with major headaches and sleepless nights which doesn't help my mg. Ummmm ivig I'm not sure what that is but I'm interested in learning about it . So far I've done pheresis and that helped me out a lot I honestly would rather keep doing that than dealing with these meds

Hello, My English is very poor but I'll try. I consider it normal process of feeling out of place. It is difficult to explain such a rare disease to family and friends. I am 36 years old and I year and a half diagnosed with this disease. After the thymectomy I felt a lot better for a while but I have to continue my medication. My biggest support my neurologist, I advice you have a good doctor that you feel confident and have experience with this disease.

Well Sorry that you have this but now just learn your body first and then everything you can about MG. When I got mine my life was just starting to fall in to place so that I could really enjoy it but that changed .I know it is scary and this site is great for support so please use it.

Now I know it will get better and if you have good doctors that is even better. I am in your corner so keep reaching it might take longer but nothing is impossible!!
Chuck

I feel for you as I remember how hard it is in the beginning. Physically, emotionally, it's a battle, it's information overload to no amount of information is enough, it's small victories and major losses, and eventually it's all about reinvention and adaption.

I set small goals, I had to know I can achieve something, anything, and then gradually raise the bar while learning to understand how to live with my condition. i became well enough to resume life as it was pre MG for about a year and then I started to feel the pressure and stress chip away... For me, the biggest lesson was learning to let go of things.... I was a mess, a weeping, sobbing mess, but that passed and I went back to my small goals, started again. Reinvention is key.

Just checking on you, how have you been. I had not been on site going to Dr. appts. and learning to live with MG. I am doing ok the Mestinon is helping and just started 5mg of Prednisone. I really want to keep you encouraged !!!!!!

Welcome to the group. It's been awhile since I've been on here but I'm glad I saw your post. I was 29 when I was diagnosed and I'still find myself grieving over the loss of having what I considered a normal life. I think it will always be something that triggers that feeling of loss but like some of the others have said, once you get your meds sorted out then hopefully you will feel more like yourself. It has been really frustrating for me as I have not responded much to the usual meds that are used to treat MG symptoms. I was doing rituxan infusions but they didn't help much. Thank God I've not had a full blown crisis. That is my biggest fear! Although as frustrating as this journey has been, I have been so blessed compared to some of our friends in this group. It just shows you how unpredictable and person specific this disease is. I can totally relate to not having many people understand. My boyfriend of 7 years is a nurse and the MG is one of our biggest fights. A lot of friends and family think we are just depressed (well we are due to the life altering change and loss! Who wouldn't be?!) , lazy, have given up, lying, etc. Dealing with other people's opinions about me is what I emotionally struggle with the most. I've always been a people pleaser and I know I should be able to stand up for myself or just not care what they think but instead I feel this huge weight of guilt every day. I am in therapy and that helps a lot as well as prayer. Staying in touch with this group helps A LOT!! Anyway, I promise I didn't mean to write a book! My heart goes out to you because I can totally relate to what you are going through as I'm sure everyone else here can. I'll be praying for you and keep us posted!

Hello, I am new to the group. I would just like to share my story with you (and others) and hope that it helps in some small way. I currently own a horseback riding stable on the beautiful island of Nevis in the Caribbean, taking tourists on beach and mountain rides. I am 71 and a retired business executive. On April 1st I woke up and could not open my right eyelid. I go to our eye clinic regularly as I have cataracts and glaucoma. When I went to them they told me I should go back to the States as soon as possible as they thought I might have Brown's Syndrome. It was suggested I go to Bauskin Palmer Eye Clinic in Miami. I traveled to Miami on my birthday and had a very tough time getting out of the airport as my left eye had cataracts and I had to hold my right eyelid up while clearing customs, etc. I stayed with some family in the Miami area. My cat scan showed what was thought to be an aneurysm by the eye doctor and confirmed by the neurologist. They explained the 3 hour procedure to me and I went to surgery. 45 minutes into the procedure they discovered I did not have an aneurysm and aborted the procedure. Somehow I had a problem breathing as they were bringing me out of the anesthesia and had a heart attack! There were other problems at this hospital that occurred and I asked to be discharged so that I could go to my regular hospital, which is Baptist Hospital. Once there I got the heart problem resolved and saw a new neurologist who after reading my documents from the previous hospital, tested me for MG. So, the first 3 months of my stay in Miami could have been reduced if I had gone to Baptist first! I am on pyridostigmine bromide, 60 mg, 3 times per day. I am back home and slowly getting my strength back but notice a small droopy eye at the end of the day. I'm not riding horses anymore as my neurologist said I must avoid the heat of the day as much as possible. That's tough living in the Caribbean! Also, I have 15 horses that require horse shoes from time to time and it is only me who can do that. Now I just have to do it slower and only do one horse per day. I spend a lot of time resting and doing a limited amount of physical work. Me and the TV are becoming close friends! It is mentally difficult making this adjustment, however, as I think back to earlier years the signs were there but I did not know what they were. Now I'm hoping that becoming a part of this support group will help in some way to better manage or reduce the pain and or fears.

I've recently been diagnosed as well, and I'm so glad to be able to plug into this group of people who understand, can sympathize, and encourage from personal experience. I am grieving over the loss of who I used to be, depressed with my limitations, angry that I have to use meds with such horrific side effects, and isolated.

The last few days I've used my time searching out the functional medicine premise that this is caused by the chemical overload in our bodies from our food and environment. Seems reasonable. I'm reading everything I can about eating clean, detoxing my body, gut health, getting chemicals out of my environment and replacing them with homemade natural products, taking supplements, vitamins, & using essential oils.

The problem is, if I make even one of these major life style changes, I could spend a small fortune (on top of my medical bills). Any advice?

I don't have any advice but would like to know how you do with the clean diet and functional med route. I'm sick of meds.

Right now I'm eating so little because of the swallowing/chewing challenges that I'm lucky to get more than a 1/2 C. of food down at each meal...especially because i have to drink in between bites to swallow.

I've lost 40 pounds in the 4 months I've had this. So eating everything raw will be impossible.

It won't be hard to leave meat and bread alone though since they're hardest to get down anyways.

It would be really difficult to go gluten-free, that's for sure! Pasta goes down easily. Same with oatmeal.

I don't think I can go dairy free, either! Yogurt, eggs, and ice cream are my easiest meals.

I'm definitely eating lots of cooked veggies. Since I can't chew fruits, I'm getting them as sauces or drinks.

All that to say... I guess I have to let the disease rule what I can swallow and chew.