Newly Diagnosed With Myasthenia Gravis: What Now?
A diagnosis can come as an unpleasant surprise or as a long-awaited answer to your worries. Either way, a diagnosis means one thing above all – you can receive treatment. Which in turn means your symptoms are going to get better and hopefully, at some point in the future a remission is possible.
We at FindMeCure understand, however, that if you’re newly diagnosed with myasthenia gravis, this positive interpretation is not the first thing that comes to mind. You probably feel dejected, it’s a normal reaction. You might have even more fears and concerns than before. You may be asking the question “What about my life now?”. We can’t replace the comfort of sharing your fears with a loved one or a licensed professional equipped to help you cope. We can, however, give you some reassurement and a few tips we borrowed from people who have been down the path you’re going. If you just got diagnosed and in your frantic search for answers you ended up here, read on.
First things first, check your sources. You want to learn as much about MG as you possibly can because information is your best weapon in this fight. Be smart about where you get your information and take personal accounts with a pinch of salt – other people’s story may not be yours. Your doctor should be your first source of information about what’s going on in your body and how the drugs you’ll be prescribed are going to affect your symptoms and your life.
But don’t stop there! There are many reliable resources available to you – from YouTube videos to online brochures, information is out there. While searching for answers, remember that medical lingo can be confusing. Thankfully, there are whole glossaries that cover all the most important terms, so you can always be in the loop when your treatment team is talking symptoms and treatment. Don’t be afraid to ask questions when your primary doctor is explaining something, even if you feel like you should already know what they’re talking about. There are no “stupid questions” when it comes to your health.
Reach out and look for support. Before you even start researching treatment options (another important step) you need at least one person in your life who understands what you’re going through and can provide emotional support and even insight. Being newly diagnosed can be overwhelming and the importance of having a strong support system can’t be understated.
You can find a fellow MG patient while waiting in front of the doctor’s office or you can be more proactive about it and join an online forum, a chat room or follow a Facebook page. You can even reach out to a blogger or an influencer who shares their experience. Depending on where in the world you live, there might even be a support group in your area that holds regular meetings in person. And if there currently isn’t one but you know that you can’t be the only one who would benefit from exchanging tips and sharing stories, you can even be the one to start a support group. Turning the lemons you’ve been given into an opportunity to help others in your situation is not only generous but also a great way to focus on something other than your disease and give your experience a positive meaning.
Prepare for an emergency. Though only up to 20% of patients experience a myasthenic crisis, for those who do the first MC happens up to a year after initial diagnosis. Don’t be scared – MC is manageable and the more health care providers understand about MG the easier MC is to handle. A myasthenic crisis is still an emergency and should be treated as such. Don’t live in fear of it but be prepared in case it happens in the most unexpected of circumstances. What does being prepared look like?
Keep information about your MG on you at all times. A simple card in your wallet should be enough. Everything from the precise diagnosis you’ve been given (e.g. generalized myasthenia gravis), to the drugs you’re taking and the drugs you need to avoid. Make sure there are people in your life who know where you keep your medication and what your symptoms are. Educate your loved ones, your roommates, your spouse, your closest friends and anyone else who might be in close proximity when MC occurs about the warning signs of a crisis.
Consider who you need to tell. The reality of Mg is that some people experience mild symptoms that benefit from treatment, while others are affected by the disease to a greater extent. You can’t really know when remission might occur and you can’t predict the effect of your medication, so it might take a few tries before you and your treatment team find the right medication in the right dose for you. In the meantime, however, life doesn’t hit pause.
If you’re going to school or work, you might consider informing some of your teachers and/or classmates about your MG. It might feel embarrassing at first but people in your everyday life are likely the first to react if you experience a myasthenic crisis. Your employer should also know about the symptoms you might experience, so you can both plan for days you’re in no position to complete your tasks or even need a few days off to visit your doctor or simply rest. MG might turn out not affecting your work in a way, in which case – wonderful. But for people with gMG difficulty moving the arms at the end of the day might make working on a computer harder.
Don’t try to shield your loved ones from your symptoms. In her invaluable letter to newly diagnosed MG patients columnist Retha De Wet warns against trying not to be a ‘burden’. Allowing people in your life to help you out when you need it and even take care of you on your worst days is giving them a chance to come through – we promise you, people will surprise you in the best way possible. And those who don’t? They have been filtered – now you know who they are in a time of crisis and you can make your discernment.
Allow yourself to grieve and reach out, to cry on your loved ones’ shoulder and not be optimistic for a while. Self-pity gets a bad rap but sometimes it’s exactly what you need to get through the day. Let your emotions go through you instead of fighting them – you have far bigger a battle ahead. Learn to take good care of yourself and rest when you need it because this is your life now and you still need to be present for the good and the bad.
Research treatment options. Together with your treatment team or alone on your own (but equipped with reliable information), look into the options you have and don’t limit yourself to the road more travelled. There are drugs used for the treatment of MG, there is some research that suggests removing the thymus gland can also help, there are physical therapy and even some alternative treatments like acupuncture. If you can try different approaches, you might find that you benefit the most from combining drugs with alternative methods, so don’t be afraid to ask your treatment team for more than just the standard medication.
If you try a few things but nothing seems to work for you or the side effects you experience are too high of a price to pay, you might want to consider experimental treatments. Look into clinical trials in your area for a drug in development that might benefit you more than what is already available. Not only are going to be among the first to get a novel treatment but you can help researchers bring groundbreaking therapies to the people who need them sooner. Even if you end up opting out, searching for clinical trials on FindMeCure can give you a new perspective on what treatments are soon to be on the market.