MG Management 101

Because I have family and friends who look to this site for the latest information, I'd like to give you a brief update about what is going on with me and the management of my disease(s). As many of you know, I have been having severe neurological reactions to my IVIG treatments, so the neurologist ordered a change in brands, added some medications, and divided my treatments into weekly infusions of 25 grams of IVIG per week (vs 50 grams every two weeks) with hope of minimizing adverse reactions and stabilizing my condition so that I don't have such disparity between good days and bad. We were hoping that this change in protocol would give me more and more good days, and that my weakest times and bouts of infection would become more a thing of the past than has been the case for the last couple of years. So far, however, in the last few weeks, I have had more treatment sessions with serious adverse reactions than I have had without them. And when I use the word "adverse", I mean much more than the usual aches and pains, fatigue, nausea and headache that often accompany IVIG treatments. To tell the truth, I can deal with those side effects pretty readily and without too much alarm, and most of those types of reactions go away with time and rest. I am actually talking about some pretty scary stuff...reactions that make me dread infusion day, even though I know the IVIG is my best--my only--treatment option. Yesterday was one of those days when things went haywire, and I found myself  wondering if, in fact, I am going to be able to continue treatment at all. The good news is that I have an excellent nurse, who took very good care of me, and I made it through a very, very difficult day. We are going to continue to try, and I'm praying that eventually we will figure out why I am having such a tough time. Hopefully, as we find answers to my dilemma, it will help others who are facing the same issues. Please keep me in your prayers as you walk with me through this journey...it helps to know that people are loving me and supporting me through the toughest of days.

I had lunch with a dear friend of mine following a doctor's appointment recently, and the subject of my health came up. Ever concerned and always striving to learn, my precious friend listened intently as I shared my sadness over the loss of several members of my Myasthenia Gravis online support group family, losses that are a direct result of ignorance on the part of medical staff, caregivers/loved ones, and even the patients themselves. Lack of awareness and knowledge of the unpredictability of Myasthenia Gravis and what to do in the event of a crisis is, unfortunately, very pervasive, and can be deadly! I realize that there are many within my MG support group family that visit this blog, so there are a few things I'd like to address that I believe (and have been encouraged to share with you) are vital to our survival. Please feel free to share this article with your friends, acquaintances, family, and loved ones. It just might save your life!

First of all, "pushing through" even when severe weakness is hovering perilously close to the danger zone is never wise, yet we all seem to try to do just that. I'm not sure if it is out of guilt that we aren't who we used to be and are trying to "prove" ourselves, or if it is that we are hiding behind a facade of strength when we know we are literally crumbling inside but don't want anyone else to know how truly weak we are. Whatever the reason, we simply must learn to know our bodies...to recognize when to rest, what the danger signals are, when to go to the hospital...and then to do whatever it takes to survive! There have been a couple of people I know of who have died in their sleep. They knew they needed rest (and went to bed to get it), but they didn't recognize the gravity of their situations; the muscles that support the lungs failed them, and they simply stopped breathing.

Do you know what the warning signs are that something is very wrong and crisis is just around the corner? Does your family know what to look for, and are they aware that things can change in a matter of moments? Are you educating yourself and becoming your own best advocate as you work to manage your disease? Do you have a wallet card that will help a first responder know what to do to save your life? If you answered "No" to any of these questions, it is time to take control of managing your MG.

I have a MedicAlert bracelet that I wear at all times that has my conditions listed and a number that a first responder can call to get more detailed information about my diseases, allergies, etc. But I also have a wallet card that has two important things on it. On one side, it says:

"I have Myasthenia Gravis (MG), a disease that can make me so weak that I may have difficulty standing or speaking clearly. In addition, I may have drooping eyelids, double vision, and even difficulty breathing or swallowing. Sometimes these symptoms are mistaken for intoxication. However, if my breathing and swallowing difficulty is severe, I may be having an "MG Crisis" that warrants emergency treatment. If I appear to need help, please contact my physician, the local EMS, or hospital immediately"

And of course, the name and number of my physician and my emergency contact  is clearly listed on the card. On the other side, it has a message for first responders:

FIRST RESPONDER MANAGEMENT

Severe Respiratory Difficulty (Complaints such as shortness of breath at rest, difficulty speaking except in short sentences, anxiety, restlessness, air hunger, fatigue, and inability to lie flat):

• Maintain open airway
• Suction pooled oral secretions
• Support respirations if needed with an ambu bag or noninvasive ventilation if available. (Breathing difficulty in MG is related to diaphragmatic weakness. Oxygen is NOT helpful and may be harmful.)

Severe Swallowing Difficulty (Complaints such as choking, gagging, nasal regurgitation, inability to swallow food or medications, anxiety and restlessness):

• If actively choking, open mouth and remove any visible food particles
• Perform Heimlich maneuver if foreign body (including food) airway obstruction is suspected
• Maintain open airway
• Suction pooled oral secretions
• Keep a calm and peaceful atmosphere
• Sit patient upright if alert

I also carry a card with a list of drugs to avoid/use with caution, should I end up in an emergency room and have difficulty communicating. This is so important, as all kinds of things that are commonly prescribed...such as beta blockers, calcium channel blockers, a host of antibiotics, and many other drugs...are contraindicated with MG.

Finally, if possible, please ask your friends, family and loved ones to join you in being educated and promoting MG awareness. My husband knows when my disease is acting up because he has learned to see the signs (whether or not I have mentioned anything to him)...drooping eyelids and facial muscles, hoarseness, lack of volume in my voice, slurred speech, difficulty swallowing, shortness of breath, and severe weakness in my arms and legs...and he is super attentive and alert. He has worked hard at learning what he can so that if I ever go to bed in a weakened state, he will know to check on me through the night and should I need to go to the hospital, I know that he will be diligent to take me. 

My prayer for you is that you will be informed, prepared, and armed with the tools you need to fight the battles ahead. Yes, we are warriors, and we have an inner strength that is fierce. But we can't let stubbornness or lack of knowledge keep us from getting the help we need when we need it most. Know your body. Don't try to wait it out if you are struggling to breathe. If you wait too long, your next breath may be your last. And most of all, never, ever give up!

"I don't know how my story will end, but nowhere in the text will it ever read...'She gave up'."