Myasthenic Crisis: What Is It & How To Be Prepared
A Myasthenic crisis (MC) is an emergency experienced by some Myasthenia gravis patients within the first year of being diagnosed. If you’re new to the whole MG thing and you want to know what to do if you happen to be one of the unlucky 15-20% of patients who have an MC at least once in their lifetime you might find that a lot of the information out there can be confusing, even bordering on incomprehensible.
The reason behind it is pretty simple actually – most of what you can find on the internet while doing your own research is not aimed at patients or their loved ones. Study after study has been done to help medical professionals better assess and treat MC. We at FindMeCure welcome scientific research but also understand the need for translation when it comes to the alienating medical jargon used in such papers.
That being said, today on the blog we’re going to help you better understand what an MC is, what dangers it poses, how to notice the first signs and what to do about them. You can also send this post to everyone in your immediate social circle, so they can be better prepared to take care of you in case of a crisis. Anyone you live with, work with or just generally spend a lot of time with could potentially save your life if they recognize the signs of an MC and are prepared to act in case of emergency.
So, first thing first, what is an MC?
A myasthenic crisis is a sudden worsening of MG symptoms that leads to a significant weakening of important muscles. This means the muscles involved in breathing too. MC should be treated with utmost diligence because it can lead to respiratory failure. The thing is, there are several muscles involved in the process of inhaling and a few that help fully exhaling too. You may not realize you’re using muscles for breathing, you may not be aware of them but your body definitely is. So, when signals don’t reach these muscles breathing gets hard, oxygen doesn’t reach every organ, tissue, and cell that needs it and… well, it can be fatal.
MC in numbers
About 15 to 20% of MG patients experience a myasthenic crisis at some point in their life. According to some sources, the first MC happens up to a year after the initial diagnosis, others say up to two years. As for whether men or women are at greater risk, numbers vary here as well but the general rule is that women under the age of 55 are 4 times more likely to experience an MC, compared to men in the same age group. After the age of 55, however, MC affects men and women in much the same numbers. We don’t currently have conclusive evidence to answer the question of ‘why’ so many factors can be contributing to this statistic from biology to the difference in life experiences but we’ll touch on those later.
Something reassuring to keep in mind is that MC-related mortality has dropped from 42% in the 60s to only 4% now, and according to the NCBI those 4% are mainly due to comorbid diseases. Medical professionals are increasingly better prepared to manage a myasthenic crisis and protocols are continuously updated as new information is presented. Provided an MC is treated with the necessary urgency, it can be successfully managed.
What triggers an MC?
A myasthenic crisis doesn’t necessarily need to be triggered by something tangible for it to happen. Sometimes, though, an MC might be a sign that there is something worsening your MG or that you’re not taking the right drugs or you’re not taking them in the right dose.
If that isn’t the case, there are a number of other things that could potentially trigger a crisis. Menstruation or pregnancy can be one of them, which would explain why women under 55 are disproportionately more affected by MC. Other possible triggers include a tumor on the thymus gland, thyroid disease, infections (especially pulmonary) and traumatic stress – either from physical injury or emotional turmoil. A change in medication could trigger an MC, so your doctor should be monitoring you in such a case.
How to know if it’s MC?
An MC is a sudden worsening of your symptoms and it can happen quite abruptly with no way to foresee it. There are a few signs and symptoms to be aware of, however, in order to take action quickly. Difficulty speaking or breathing, especially if the skin around the neck or ribs pulls in when taking a breath is a major red flag. Morning headaches can be an early warning sign if you notice them soon enough and stay mindful of any other symptoms. In any case, if you have MG and you experience morning headaches, warn your close ones and your doctor, so they can scan for any changes as well.
If despite regularly taking your medicine, you experience interrupted sleep, inexplicable weight loss, difficulty chewing and swallowing, and you feel fatigued and tired during the day, these are also red flags. A major warning can come in the form of a cough mixed with secretions like mucus or saliva and/or inability to clear said secretions.
A simple test you or a bystander could perform to assess your respiratory function is taking (or making the MG patient take) a deep breath and then count to 25 out loud as you/they exhale. If you can’t count to 5 without pausing, you may be in serious danger of respiratory failure.
What can I do as a bystander?
If you’re reading this because someone you love and care for has myasthenia gravis and you want to be better prepared to handle an emergency, first thing you should know is that an MC requires immediate medical attention. If the MG patient has difficulty breathing, they may need to be intubated, so call for an ambulance.
You can’t do much for them in terms of immediate emergency care because they may have secretions blocking their airway. However, your role as a bystander may be crucial in reporting their symptoms to the responsible medical staff. When the MG patient is intubated in order to help them breathe, they won’t be able to speak so it might be up to you to inform the medical staff about every symptom that you know of. A cough might not speak anything to you but it gives emergency care specialists a lot of information.
When should I be concerned?
If your stomach is upset after taking the drugs you’ve been prescribed if you have a fever or a cold, you cough or you experience morning headaches, if you have missed your scheduled medication, call your doctor.
If your symptoms suddenly worsen, if you have trouble swallowing, talking or breathing, seek immediate emergency help. Alternatively, if you are a relative, a friend or a partner of someone who lives with MG or has been recently diagnosed or even tested for MG and you notice these symptoms, call the emergency line in your country. If they can’t talk, especially, is very important that you can accurately report their symptoms, so take note of how they’re feeling previous to the crisis.
A myasthenic crisis is life-threatening and should be approached as such. However, there is light at the end of the tunnel: with new medical developments, better care is accessible and mortality has decreased significantly as new protocols have been installed. All of this is possible thanks to medical research and clinical trials that allow professionals in the medical field a better understanding of the disease and how to treat it. If you’re interested in participating in such a trial and lending a helping hand to scientific progress, search for MG trials on our platform.