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Newly diagnosed? Here’s What You Need to Know.

Newly diagnosed? Here’s What You Need to Know.

By Rebecca Molitoris

Perhaps you were just diagnosed after a sudden onset of symptoms like eye drooping or double vision, and this came at you out of seemingly nowhere. Or, perhaps you’ve been experiencing odd, unexplained symptoms for months or even years and this comes as somewhat of a relief to finally have an answer to your medical journey. Either way, getting a diagnosis of MG is a life-altering moment.

 

What you do after getting the diagnosis can help shape the path that your MG will take. Here is what I wish someone would have told me when I found out I had MG:

 

You may feel a lot of emotions after being diagnosed. You may go through a grieving process of what your life could or should have been without having MG. This is normal. Allow yourself some time to process what you are going through. But also know that there is hope. There are treatments and medications that will help control your MG symptoms. Which brings us to the next step – taking control.

 

You are not a victim. Even though you may feel physically weak, you have the power to fight back against this disease. Find yourself a good neuromuscular specialist. Be prepared – arm yourself with knowledge about MG. The Myasthenia Gravis Foundation of America (MGFA) is a great source of knowledge of all things MG. If you go to www.myasthenia.org, you will find brochures on currently available treatments, a list of specialists in your area, a list of available support groups, hopeful life stories of patients with MG, and much more.

 

Find a local or virtual support group. The MGFA oversees several support groups throughout the country. While each person’s course of disease is different, connecting with other myasthenics can provide you with hope that remission is possible and lots of tips and tricks about living well with this disease until remission is achieved. Support groups provide a safe space in which to vent and ask questions. It is great to be with people who understand what you are going through because they’re living it too.

 

Once you’ve found a neurologist who is familiar with MG, armed yourself with the latest information, and built a support system, you can begin to visualize what your new future might look like for you. I say new future, because you may have to rethink or alter the dreams you had for yourself. Or you may have to approach those dreams differently.

 

One of the most important things in your new future will be planning. If you’re used to being spontaneous about all your activities, this concept may seem foreign to you. If you’ve been a planner all your life, then this part may be a piece of cake. You will find life with MG will be smoother with a little planning.

 

For instance, you may have been prescribed several new medications. Investing in a weekly or even monthly medication holder will simplify your day. I store my medications in a pretty box out of the way. Every two weeks, I fill my medication holder with the necessary prescription drugs so I can quickly take them daily without having to open a dozen bottles every day thus saving time and energy. The one exception to this is my Mestinon™ or pyridostigmine bromide. I currently take it every 4 hours. You may take it more or less often as directed by your neurologist. This particular drug absorbs water so readily that it shouldn’t be stored around water sources like the kitchen or bathroom sink and should be dispensed as needed instead of counting them out over days or weeks.

 

Be aware of what medications and common items may aggravate your MG. For instance, did you know that the worst drink for a myasthenic is gin and tonic? Both Juniper berries and the quinine in the tonic water can cause you to become weaker. You can download the latest list of contraindicated drugs at www.myasthenia.org. Please let every physician that treats you know that you have MG and be sure and share all medications even over-the-counter supplements with your treating doctor. Other triggers that may make your MG worse are ongoing stress (both good and bad stressors), sleeplessness, and heat. To combat weakness from overheating, keep an ice pack in your fridge to apply to drooping eyes, or place it on pulse points like your wrists, back of neck, and behind your knees for a quick cooling.

 

Another part of planning is listening to your body. This may be hard to do at first as you learn what types of activities make you weaker. Some people find that they have a lot less energy in the evening, so they plan activities for weekends and spend quiet weeknights at home. You may find that you’re unable to do the things you were used to doing before MG like playing 18 holes of golf or running a mile. You may have to break your activities down to manageable chunks of time. For instance, prepping dinner in the morning when you are at your strongest. If you listen to your body and rest when you start getting weak, you will soon find what works for you.

 

Utilize gadgets and energy conservation techniques. Don’t stand when you can sit to do an activity. Lie down and rest when you can. Use an electric can opener, crock pot, electric toothbrush, and electric razor, etc. anything that saves you precious energy and time. Use delivery services instead of going out to the grocery store. Ask if you can work remotely from home so you can have extra time to rest and don’t have to expend energy driving or using transportation before putting in a day at work. Don’t be afraid to ask for help.

 

In life we are rarely given the opportunity to reassess the goals and dreams we made for ourselves. We are usually so busy living life that it doesn’t occur to us whether it is really working for us or not. The diagnosis of MG gives us one of those rare life-assessing times. You may choose to follow different pursuits like changing careers or going back or starting school. Whatever you decide, know that you are not alone. There are MG patients young and old willing to help you on your MG journey. Reach out, you’ll be glad you did.

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