Is this one more well-intentioned article that won’t help me?
I certainly hope not.
But then again, what gives me the right to address this issue with you? We will get to this in a little bit.
As a person with MG, have you been on the receiving end of conversations (dare I say “lectures”) by well-meaning healthcare providers who seem to be convinced that they know your MG better than you? So have I!
As a person who defines yourself as a sum of your life-experiences — do you sometimes feel that non-MG healthcare providers seem to come to the conclusion that your symptoms “may be MG” without a complete analysis? So do I!
As a person who sees many healthcare providers, do you wish there was a way that you could help them coordinate the care between MG and your non-MG conditions? So do I!
To answer the question I asked at the beginning (“what gives me the right…”), I would like to share a little of my life with you. Not too much, but enough. I was diagnosed with MG very recently (less than a year ago) after a gradual decrease in muscle strength with exertion. The diagnosis was not straightforward – which is “par for the course” based on my conversations with others. Like many of you; my life as 2 phases; The first-before MG, and the second-after MG.
Before MG I had adjusted to a life with more than 50 years experience with type 1 diabetes. My diabetes did not define me. Rather it was an unwelcome visitor that barged into my life when I was 6 years old and has lived with me ever since. I have not been able to get this visitor to leave, and we have learned to live with each other. In fact I like to think the visitor did a lot of positive things for me. My motivation for going to medical school was based on a desire to help people like me, and to become knowledgeable enough to do so. After medical school I went on to become a pediatrician and an internist. I then received additional training to become a pediatric and adult endocrinologist, and then settled in Asheville NC where I treated adults and children with diabetes and related conditions for many years. Then came MG. I am now living in the “after MG” world and learning so much about this disease.
My “before MG” experiences may help me adapt to the “after MG” world. I hope that some of my experiences may be helpful to you.
Life with MG can be challenging; from managing symptoms to multiple medications to worrying about potential worsening. However, we know that these challenges are amplified further when people are managing other conditions in addition to their MG. People with MG that have other medical conditions often require treatment by health care providers who are not experts in MG. Because these health care providers may not know how MG does or does not affect other medical conditions – people with MG may experience barriers in receiving the care required for these other important medical conditions.
Here are some specific examples of situations that can occur, and some suggestions for working through them. I would appreciate additional situations and solutions you can provide.
Diagnosis and treatment for non-MG conditions that takes MG into account.
- This is where a primary care physician is especially helpful. Typically, this is a Family Practitioner or internist, but it doesn’t have to be. The American Academy of Family Physicians summarizes the characteristics of primary care in this way: “Primary care is that care provided by physicians specifically trained for and skilled in comprehensive first contact and continuing care for persons with any undiagnosed sign, symptom, or health concern”.
- From my personal experience, It is the “undiagnosed sign, symptom, or health concern” that is so critical for the primary care physician to address. My primary care physician continues to evaluate my existing and new health concerns. Her evaluations consider the most likely causes, and if she feels that MG may be playing a role, she let’s me know. To me, this is very reassuring, as it does not automatically assume that MG is the cause.
Strongly related to above is ensuring your health by working to improve communication between your MG expert and other healthcare providers.
Although many people find fault with electronic medical records (EMR), I have found a very real advantage to my MG specialist (and my other specialists) being able to weave the complex physical exam and laboratory data (the “objective” information that is evaluated at your visit) into an impression of your disease at the time of the visit. This part of the evaluation is the “Assessment & Plan” and too often with paper charts it was illegible or so short as to be uninformative. Now with the power of computers (and physicians learning how to type!) the “Assessment & Plan” can be detailed and understandable enough for your primary care provider to understand the nuances of your MG – and to know what your MG specialist is doing, and perhaps more importantly…. What is not being done by them and would be a great opportunity for the primary care provider to do pick up on.
For maximum benefit of the EMR to be obtained, it is suggested that you may facilitate this communication yourself by:
- Requesting the MG specialist send the EMR note electronically to all your care providers
- Consider logging in to your MG specialist EMR through your patient portal and then downloading the office note. You can then send the note to your primary care physician by old fashioned mail, or by a “PDF” attachment to a message you send them in your primary care patient portal, or you can simply print off the MG specialist note and physically bring it to the next appointment. Most offices will not accept confidential medical information sent as commercial emails (ie gmail, aol, yahoo, etc)
- Consider a telehealth visit with your primary care physician soon after the MG specialist visit to go over the specialist findings, and make sure all your questions about “next steps” are addressed.
How can you as a patient with MG best advocate for yourself?
This is not specific to MG, so there are very useful approaches that you may consider using. It has been my general experience that advocating for yourself at a medical appointment can be challenging, and that planning ahead can lower the stress and help define what your priorities for that visit are. If the doctor is rushed and can only answer 3 questions… what would they be?
Seeing a Medical Professional
“Being a patient is stressful.” These strategies will keep your mind clearer when you are dealing with a medical diagnosis.
Prepare for Your Appointment
To ensure you have the best possible experience with your doctor, it’s best to come prepared. Ideally, you’ll already have your medical history and list of current medications ready to go, but there are a few more steps that could make your visit even more productive.
- Set goals of what you’d like to address with your doctor.
- Make a list of all your symptoms and concerns about your health scare
- Try not to overdo internet research before you get to the doctor’s office.
- Keep in mind that your doctor is only human, and has probably worked a long day. Advocate for yourself, but also be respectful of your medical team and their time.
Ask Questions
We’re taught to listen to what the doctor says, and while in most cases that’s a good idea, in order to be our own advocates, we also have to speak up and ask questions. Remember: There is no such thing as a stupid question. If something comes up that you hadn’t considered, ask about it. If you don’t understand something, say so. This includes having the doctor explain any complex medical terminology.
But direct your questions appropriately.
- Questions about scheduling appointments? Ask the front desk.
- Getting ready for a hospital stay? Ask the nurse (not the doctor) about what clothes to bring.
- Have a specific medical questions about your diagnosis or treatment? Ask your doctor. Chances are you’ll come up with additional questions as soon as you leave the appointment. Ask the doctor or nurse for the best way to contact them with these follow-up queries.
Keep Track of the Answers
When you’re in the doctor’s office because of a health problem, you may feel anxious or rushed — either way, it’s helpful to record the answers to the questions you ask your medical team, as well as the other information they give you. Bring paper to your appointment (or if you forget it or a pen, just ask the receptionist) to take notes of everything that is said during the appointment. If you’d feel more comfortable having an audio recording of the appointment, ask your doctor if you have their consent to record the office visit. There’s no need to purchase any equipment: most smartphones come with a free recording app, like Voice Memo. Depending on the nature of the appointment, it may be helpful to have a family member, friend or partner either go with you for a second set of ears, or call in on speakerphone so they can hear and take notes on everything being discussed.
Make Sure You Are Heard
A doctor’s appointment should feel like a conversation, and it’s important for both you and your physician that your voice is heard. Asking questions is one thing, but it’s also necessary to speak up when you don’t think you’re being heard or understood. There is no rule saying that the doctor’s opinion is the be-all and end-all. They are capable of making mistakes or, in some cases, simply ignoring patients and their concerns, which can be especially true when the patients are women or people of color. Therefore, it’s very important that you leave the appointment believing that your doctor is taking your pain seriously.
Be as specific about your symptoms as possible. The more information you’re able to provide to your medical team, the better your chances are of getting an accurate diagnosis. If the doctor is still being dismissive, calmly and respectfully express your concerns, and let them know that you don’t feel as though you’re being fully heard. If this doesn’t work, it may be time to change doctors or get a second opinion.
Make Sure You Understand
If the doctor ends up making a diagnosis in the appointment and you don’t understand what it is or what it means, feel free to ask additional questions. Don’t hesitate to ask the doctor to refrain from using medical jargon when explaining what is happening to you. Some medical professionals will even draw pictures or diagrams to help illustrate exactly what is going on in your body. If you’d like more information than the doctor is able to provide during the appointment, ask them where you can read more about the condition. This way, they’ll point you to a reputable book or website, so if you’re going online for information, it will be accurate. You can also ask if there are any online resource groups for people with the condition.
Along with your diagnosis, it’s important that you also understand how the doctor plans to treat your condition. Don’t leave until you know the plan.
Making decisions regarding your health care or treatment can be difficult.
- If you are faced with having to choose from multiple options, you can ask to speak with a bioethicist or counselor. While not all medical facilities have them on staff, your medical team should be able to point you in the direction of someone who can help walk you through the decision-making process.
- Make a list of the risks and benefits of each option, taking into consideration what is best for treating your current medical issue, as well as what would be best for your health in the long run.
- Once you understand your diagnosis and treatment plan, it may be helpful to let trusted family members or friends know that you’re sick so they are aware and can check in periodically. You can also ask them to weigh in on the decision you have to make regarding your treatment if you’d like additional opinions.
When You Need (or Want) a Second Opinion
Some medical conditions have routine, straightforward treatment procedures. Other times, there are multiple ways to treat a patient, and it can be difficult to determine which option would be most beneficial. That may mean it’s time to get a second opinion. Moreover, if your doctor recommends a procedure that is invasive or your diagnosis is severe, that’s another good time to get a second opinion. This is true for diagnoses and treatment for both your physical and mental health. Doctors should not be offended if you ask for a second opinion, and may even recommend other physicians they trust.
When it comes to selecting a doctor for a second (or even first) opinion, don’t be afraid to shop around. If you’re going in for surgery, ask potential surgeons how frequently they perform a specific procedure. Even if it’s something basic that you assume all doctors know how to do, ask if the procedure is a regular part of their practice.” -reprinted with permission of the New York Times.
Medication choices for non-MG conditions that are appropriate for MG
Here there is a real challenge. As people with MG have very different abilities to tolerate medications that can affect MG. What has worked for me is to make healthcare providers aware of internet sites supported by MGFA where medications that have special considerations for people with MG have been posted after appropriate peer-review.
I would strongly recommend websites that are produced by non-profit foundations and that are “peer reviewed” or compiled by groups of experts. I am very reluctant to endorse opinions expressed by individual people – whether they are physicians or not. The reason is that individuals have individual opinions and evaluate information differently. So for me, I highly value information that is arrived at by discussion and consensus, especially by people who won’t make money based on whether I follow their list or not!
Examples of websites you may want to consider are below:
- From the Myasthenia Gravis Foundation of America (MGFA) website: “Cautionary Drugs.” The link is here: https://myasthenia.org/wp-content/uploads/Portals/0/Cautionary%20Drugs.pdf
- If you do a google search for “myasthenia gravis medications to avoid” you get some good results as shown below. Myaware.org is an MG foundation in England: UAMS.edu is university of Michigan Neurology department with a nice PDF list; UptoDate is an incredibly value subscription medical reference. The information on what drugs to avoid is buried in a longer article.
Thank you for taking the time to read this article. I hope it was helpful. If you want to reach out, please do so. pstrumph@gmail.com