Myasthenia Gravis is a rare disorder in the eyes of most of the world. In fact, few workers in the health-care system will come into contact with MG patients during their careers. As a result, patients with MG who must make use of the health care system , for any reason, are wise to adopt a cautious approach when they are admitted to hospital. It is natural to assume people operating a hospital would be educated in the appropriate handling of a patient with MG. The truth is often far from that assumption.
During a recent hospital stay, an MG patient became keenly aware of the importance of staying on guard in order to protect his best interests as a myasthenic. He found that many of the nurses, aides and medical technicians welcomed his input.
To remain passively trusting, however can be dangerous, so this article was written with the hope his experience help raise the consciousness of other myasthenics in how to approach contact within the healthcare system.
The doctor told this patient one day, he was wanted in the hospital to perform a series of tests for a gastrointestinal problem of unknown cause. He needed to be hydrated intravenously since he had lost a lot of fluids. As hospitals are not unknown to him, he thought he knew what was coming. He learned however that a myasthenic needs to be pro-active at the very on-set – admission. With a suppressed immune systems, many myasthenics take Imuran – and without knowledge they may be asked to share a room with someone who has an illness that could be potentially dangerous for a myasthenic..
Myasthenia Gravis itself, rarely causes death. But serious illnesses such as pneumonia and tuberculosis can be extremely dangerous to myasthenics with a compromised immune system. After several days in the hospital, the patient made a comment to his doctor that he felt, he was not getting enough sleep and this was affecting his overall health. The doctor responded in what is considered a typical response by some medical personal, and prescribed a sleeping pill rather than speaking to him directly. Convinced that most doctors have never been admitted into the hospital the patient felt what he really needed was to be left alone at night for a time to relax, rather than a sleeping pill, knowing as well, that some sleeping medication is not recommended for myasthenics. Similarly other drugs were prescribed without first checking their safety for myasthenics.
One day, the patient was scheduled for a procedure which required anesthesia . The patient again assumed the skilled technicians would be alert to any special considerations for a patient with myasthenia. In questioning the nurse administering the drug, the patient realized she had no knowledge whether the drugs were or were not safe for myasthenic.
Though the patient appreciated her honesty the fact that the information regarding his MG had gone unnoticed, he decided it was up to him to ensure his own safety. He asked the attending nurse to call a neurologist before they continued any further and to inquire about about the safely of the anesthesia. This is a situation many myasthenics can find themselves even though there are many people who work in the system and who are by and large an educated and caring group of individuals, though they may not be completely knowledgeable about MG.
We want to emphasize that the only protection a myasthenic can expect to have is their own personal education and an “on-guard” attitude. Be sure to ask lots of questions about the treatment and medications you are being given and be sure all of your caregivers know of your condition. If you are unable to advocate on your own behalf – be sure you have an informed family member, friend or colleague to act for you.
Editors Note: The MGABC office in Vancouver has copies of Dr Ogers’ book and hospital packages available for our members who may have to be or need to be admitted to hospital.