Hi, Sue! First of all, your life is not ending!!! Your life has just changed. That does not mean your life will be awful! I have lived with MG my entire life and just adapt to what comes along. I'm almost 60, btw. I have had exacerbations and a crisis. I'm fine!!

I know my triggers. I know when I am worse by certain signs (O2 becomes lower, eyelid droop doesn't recover as well, muscles cramp or spasm, etc.). An oximeter is a useful tool to have, as long as you don't obsess over the readings every single day!

Someone I know is fond of saying, "Don't be scared, be prepared!" He didn't say that about MG, but that could be said about anything in life. Knowledge is power, and is reassuring. Although, you sound as though knowledge may make you afraid.

Knowing what makes MG worse is empowering. That way, you can avoid those things. No need to be afraid when you understand what makes a situation worse OR makes it better!

As long as you know as much as you can about MG, and you take good care of yourself (along with your neurologist and, hopefully, pulmonologist), life with MG should be fine! Not normal by any means, but fine.

A MG patient should get enough sleep, and nap if they are tired/weak during the day. We should avoid stress. We shouldn't get too hot. If we do, we should cool down right away (and then nap). You should know that MG can become worse after surgery or an infection. Again, anything that can make MG worse can be managed! No need for fear. You can handle this!

I'm going to get all philosophical. Why? Because fear is worse than the reality. If you find yourself fearing something, play the "what if" game. I mean, what if MG caused you to go to the hospital. Well, then the staff would take care of you. And to prepare the best for that, you can take a lot of steps to set yourself up for success!

• Learn about what signs to look for to determine if MG is worse (just normal everyday worse, an exacerbation, or a crisis).
• Seek out your neurologist (or an ER) if MG does become worse.
• Ask your neuro to write a plan for the hospital of what to do if you have an exacerbation or a crisis. Give that to the local hospital and have one in a wallet or purse.
•Have a medical alert card and bracelet for anyone so they know all of the basics about you (insurance, contacts, implants, allergies, medications and the dosing schedule, drugs you should avoid, etc.).
• If you have an increase in symptoms, call your neurologist for advice.
• Keep a log of new symptoms, to understand your normal and when MG is worse.
• If you do become worse, though not in an exacerbation or crisis, tell your family and friends! Knowing that they know can make you feel better, too! Or ask them to stay with you until you are better.

That is only a short list of what you can do to keep yourself in the calm, happy mode and not in a fearful one! You could also think of fear and love as opposites. Meditation helps to keep people in a calm, peaceful, loving state. I do that every day, and will never stop. Meditation helps that much.

Personal empowerment can help as well. I love Matt Kahn. He is funny, smart, and just talks about things in such a unique perspective. He has many videos that can help understand why we, for example only, turn to fear. There are so many things (when we're sitting around, weak as a kitten) that we can do to get our minds off of our situation, until we recover our strength!

You may also need to alter your workout program. Less reps, less weights, for example. I don't know how you workout though. Fluid exercises like a Total gym or swimming are great. Swimming keeps the body cool while exercising, which is good for MG. Have a fan blowing while you workout, if you can. Take a nap after exercise. There are many ways to stay in as good of shape as possible, but still adapt to MG.

I have known so many people with autoimmune diseases. The reasons for death—don't get freaked out!—is often not the disease!!! There can be complications from using immunosuppressants for many years. There can be other diseases that cause further complications with medications/side effects. But even managing all of that can be okay!!!

You know how if you think about one thing all of the time, more than likely, that one thing will manifest in your life? Well, think, "I'm going to be fine managing MG!" Then I'm sure you will be!

MG can be overwhelming, even for those of us who have had it a long time. But that's only because MG can interfere with doing things we want to do. If you adjust your perception (reduce expectations) of what is okay to do in life, then the new reality will be just fine.

I really hope this has helped, and not overwhelmed you. Just take things one step at a time. Use any tools necessary, like writing notes, that will help you. And don't be afraid to say, "NO!" if you are invited to an event that you know darn well that you can't handle. Socializing uses a lot of muscle groups and can really wear someone out.

I hope others here will give their perspectives. I'm sure you will have a good life with MG. But you do need to set yourself up for that success!


Annie