Through our programming, we are able to offer some great events and a few weeks ago we held our St. Louis support group meeting that focused on emergency preparedness. While this is an intimidating thought, it is important to be equipped with the right knowledge and tools so that those around you can also be assured that they are working in your best interest as it relates to your MG.
Our support group meeting was small. Rest assured, we all wore masks, socially distanced, and confirmed everyone was in good health with temperature checks and pre-questionnaires.
The topic of conversation was emergency preparedness. Allison Foss, Executive Director of the MGA, led an educational presentation on preventative measures for a MG crisis and what to do in a MG medical emergency. The group had a lively discussion about MG triggers, warning signs/symptoms, what constitutes a MG crisis, and steps to take when planning for an emergency that could involve your MG.
I myself have never been in a true myasthenic crisis. For those wondering, technically speaking, a myasthenic crisis is when an individual with myasthenia gravis has extreme weakness, requiring intubation or ventilation. Nevertheless, crises can look different for each individual and it is important to know your personal triggers and to become in tune with your body.
Thankfully, I’ve just had MG exacerbations. Saying that sounds like it’s not a big deal, but for me, it is. My exacerbations can be life-altering and radically change the way I have to operate day to day. My most recent exacerbation caused my double vision, blurry vision, and droopy eyelids to return. I’ve always maintained a fluctuating droopy eyelid(s) but I hadn’t experienced diplopia in quite some time and needless to say I was quite scared when it returned. The thought of losing all the strength I had built up over the last 16 years was paralyzing. Knowing I had a care team and support system to help me through this and understand what was going on this time was incredibly comforting because at one point in my life (misdiagnosis), I didn’t. I’m happy to say that after establishing a rehabilitation process with subcutaneous immunoglobulin and prednisone, I am almost 75% back to where I was when I was stable!
Talking about a MG crisis is scary. Having one is even scarier. If I’ve taken anything from our latest events, it’s understanding the importance of having tough conversations. At one point or another, everyone is faced with unexpected situations. The good thing about having this particular conversation is knowing we have information and strategies to aid in the case of a MG crisis.
Important things to note that pertain to emergency preparedness: The MGA is in the process of designing some resources that could help you in the anticipation of an MG emergency. In the meantime, check out our updated Cautionary Drugs List for MG patients! This list was crafted in collaboration with our Medical Advisory Committee (MAC). It is comprehensive and easy to digest and reference. Check it out and as always, do not stop or add any medication before speaking with your own healthcare provider.
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator for the Myasthenia Gravis Association.