Your healthcare is exactly that, yours. As a patient trying to live their best life with MG, you are your best advocate. Please see some helpful information below on choosing your healthcare team.
Find a Doctor
Choosing a doctor is one of the most important decisions you can make in managing your MG. It is important that you are comfortable with your doctor and that you make decisions together regarding your care.
Choosing Your Health Care Provider: When choosing your MG healthcare provider, it is important to know your style. Do you need someone with whom it is easy to talk? Perhaps you don’t need lengthy explanations, just someone with experience treating MG? Perhaps you are comfortable talking to a doctor of the same gender? Whatever your needs are, make sure to keep them in mind when finding the right healthcare professional for you.
Partners in MG Care: We have created a network of quality MG healthcare providers from around the U.S. You can learn more about Partners in MG Care here
Find a Doctor Near You: You can find an MG healthcare provider in your area here
Be a Take Charge Patient
What does it mean to be a “take charge” patient? It means that you oversee making important decisions about your health. Having a diagnosis of MG may be overwhelming, but by arming yourself with knowledge, you can “take charge” of your MG care. See our 2019 National Conference presentation on this topic here.
Your Healthcare Team
Assembling your healthcare team is an important first step in managing your MG. You can start with a neurologist or other MG expert, but you will also need an internist or general practitioner to help manage your overall health. Depending on your situation, you may also need a visiting nurse, physical therapist, or home health care aide.
Taking Charge of Your Health
It is important to inform yourself about healthcare choices available. The more you know about MG, the better equipped you are to make decisions about your health.
Know Your Rights
You have rights as a patient. You may choose to find another doctor or ask for a second opinion at any time. Our Resources page has a wealth of information concerning insurance coverage, government programs and other information that can help you along the way.
Track Your Symptoms with the My MG App
How are you doing? You will hear this question often, but every day might be different. To help you assess how you are doing and living with your MG, download the myMG app. The app will cover information that may not come up in a typical doctor visit to help you assess the overall impact of MG on your life. Through questions about activities of daily living and quality of life, it can track multiple aspects of MG to encourage discussion with your healthcare professional.
The myMG app also puts podcasts and cautionary drug information right in the palm of your hand.
What You Need to Know in an Emergency
If you are experiencing severe shortness of breath, severe swallowing and choking problems, or are unable to walk or talk, call or have someone call 911 now.
If an emergency happens, the best thing to do is to plan and inform yourself in advance. To help you stay prepared, please see emergency management resources here. If possible, bring someone with you that can communicate on your behalf if your voice weakens. If time permits, call your doctor’s office and inform them of your impending Emergency Room visit so they may communicate with Emergency healthcare personnel.
Preparing for a Hospital Stay
Have you been told you need an inpatient hospital visit? If so, a few helpful tips may make your hospital stay a little easier:
- Bring toiletries – a toothbrush, toothpaste, deodorant, hair brush, and soap is usually enough
- Pack comfortable clothing – if the hospital allows you to wear your own garments, loose clothing can help you stay comfortable in an unfamiliar setting
- Bring mestinon in its original prescription bottle – the hospital pharmacy may not have mestinon immediately available
- Have mestinon at the bedside – ask your doctor or hospital staff to have medication nearby so you can take it on time if the nurse is unavailable
Health insurance comes in many different forms; there are public and private insurance plans as well as group-based and individual insurance plans. If you are not eligible for insurance through an employer, you may be eligible for public health insurance programs, like Medicaid and/ or Medicare.
If you do not qualify for public health insurance programs or insurance via an employer, you can obtain coverage through a State-operated exchange or the Marketplace. Please note that there is a fixed period for insurance enrollment via the Marketplace, called “Open Enrollment”, unless you have a special circumstance such as loss of health insurance, a move, a new baby or a marriage. To see if you may be eligible to apply outside of the Open Enrollment period, please see here.
Please note that under the current law, health insurance companies cannot refuse health coverage or charge you more just because you have a “pre-existing condition”, a condition that you had before you enrolled in health insurance.
Health insurance plan costs vary widely, depending on where you live, your age and what level of coverage you are looking for. Health insurance plans available via the Marketplace are based on an income scale. For people in certain income categories, you may qualify for tax credits that you can apply to the costs of your health insurance.
There are different types of costs associated with health insurance coverage, please see an overview below that can help:
- Premium: Payment made to your health insurance company to keep your plan active, it is usually charged on a monthly basis
- Deductible: A fixed amount that you have to pay every year towards medical costs before your health insurance begins payment on medical costs, some plans do not have deductibles
- Coinsurance: A percentage of the medical bill that you are responsible for after you have paid your deductible, some plans do not have coinsurance
- Copayment or “copay”: A fixed fee that you pay every time you visit the doctor or fill a prescription, some plans do not have co-payments
Please keep in mind that many health insurance plans are required to cover preventative services without charging you a copayment or coinsurance, even if you have not met your deductible for the year.
As every plan is different, it is important to understand if your medications are covered by your plan, or if you may need additional coverage to help. Different medications fall into different categories, or “tiers”. For example, if you have Medicare, you may need to enroll in Medicare Part D or a Medicare Advantage Plan, which covers prescription drugs.
If your medications are not covered, or you have high costs for your prescriptions, please see a list of resources that can help pay for your medications.