Frequently Asked Questions


What exactly is MG?

  • MG is an autoimmune, neuromuscular disease that causes fluctuating muscle weakness that tends to get better with rest.  It affects the voluntary muscles only, and common symptoms are droopy eyelids, double/blurred vision, problems breathing, speaking and swallowing, and general weakness in the arms, legs, and/or neck.
  • With MG, the signal is not getting from the nerves to the muscles.  There are antibodies your immune system produces that mistakenly block the signal at the neuromuscular junction, the space between the nerve and muscle.


What causes MG?

  • Right now the cause is unknown, as with most autoimmune diseases.  There may be a genetic component and there is currently research going on to study the genes of MG patients.


Will my family also get MG?

  • MG is not believed to be hereditary.  However, if one family member has an autoimmune disease, it is more likely that other members might also have an autoimmune disease – but not necessarily, and not necessarily the same disease.


Can I have more than one autoimmune disease?

  • Yes – it is more common for someone with one autoimmune disease to be diagnosed with another, but that doesn’t mean you will definitely have another autoimmune disease.


Can MG be cured?  Is it progressive?

  • No – but it can be treated and many people can live “fairly” normal lives.  The first 1-3 years are usually the most difficult as symptoms may still be showing up, and it takes a while for you and your neurologist to figure out what treatment will work best – and some medications can take several months to work. 
  • MG fluctuates, which means you will have both good and bad days/weeks/months/years – it sometimes goes into remission where you have no symptoms, but usually comes back again – there is no way to predict if/when you would go into remission, or how long it would last.


How is MG diagnosed?

  • There are two blood tests that test for different types of antibodies.  You can still have MG if you test negative on both, but it will be harder to get diagnosed and an expert in treating MG will need to diagnose you based on symptoms.
  • There are also tests called EMGs that use electric stimulation of the nerves to find various patterns characteristic of certain diseases.  Single fiber EMGs are more sensitive.
  • More rarely, doctors may test with an injection of Tensilon (Edrophonium) – if you have MG, your symptoms will immediately and temporarily get better.
  • MG can also be diagnosed based on symptoms, clinical examination by an experienced doctor, and help with tests such as an “ice pack” test (put an ice pack on droopy eyelids to see if it helps them open up).


Can I still work if I have MG?

  • That depends on your symptoms – some people are able to continue their normal jobs and may need a few accommodations, some may need to switch to a lower-stress, lower-activity job, and some with more severe symptoms may not be able to work.
  • If you are unable to work, you can file for Social Security Disability; it is possible that someday you may be able to return to work if your symptoms get better and stabilize.


What makes MG worse?

  • Stress, infections/illness, hot temperatures (although for some cold bothers them more), and over-exertion are all known to make MG symptoms worse.  The use of hot tubs, saunas, very hot showers and working in the heat of the day often bring on symptoms. Sometimes symptoms seem to get worse for no apparent reason.


How is MG treated?

  • The most common medication prescribed for MG is Mestinon.  This is a short-acting medication that helps relieve the symptoms of MG, but doesn’t treat the underlying disease.  It usually starts to take effect within an hour of taking it, and the effects wear off within 3-4 hours.   Side effects often include GI distress, sweating, and runny nose.  It is possible to overdose on Mestinon, and the symptoms of overdose are similar to worsening MG symptoms – pay attention to if you feel better or worse about an hour after taking it.
  • Prednisone is a steroid that helps suppress the immune system and is often used for MG.  It usually begins helping within a few days and often does a great job of controlling symptoms.  However, it has a lot of side effects, especially with high-dose, long-term use, so doctors try to limit the amount of time you are on higher doses of Prednisone.  Do not stop taking it suddenly, as it overrides your body’s natural cortisol production and you need to wean off slowly so your body can adjust.   Some people get down to a certain dose and are unable to go lower without having more symptoms.
  • A class of drugs called immunosuppressants helps suppress the immune system and treat the underlying cause of MG.  These often take several months to begin working, and are often started along with Prednisone so that you can begin weaning off the Prednisone once these take effect.  The most commonly used for MG are Imuran, Cellcept and Cyclosporine.  Others that are more experimental are Methotrexate and Rituxan.
  • IVIG (Intravenous Immunoglobulins) is an infusion of a blood plasma product that is often used when symptoms become worse and harder to control, and for some is used as a maintenance treatment.  IVIG can be done in the hospital or in-home, and takes several hours to complete.  It is a temporary treatment that usually helps relieve symptoms within a few days.  It is a very expensive treatment and many insurance companies only approve it for crisis situations.
  • Plasmapheresis, or plasma exchange, is a process similar to dialysis where your blood is filtered through a machine, and the plasma is removed and replaced with a product called Albumin.  Plasmapheresis is a more invasive treatment as it requires a large port, and can only be done in a hospital or infusion clinic.  It is similar to IVIG in that it begins helping within a few days, can be very effective for those in a crisis situation, and is sometimes used as a maintenance treatment.  It is also a very expensive treatment.


Are there any alternative treatments for MG?

  • Rest and lifestyle changes are the most common non-medication treatments.  You may need to cut back significantly on your activities to save your energy for those that are most important.
  • Always check with your neurologist before taking any supplements or alternative medications, even over-the-counter ones, because some can interact negatively with MG or with other medications you may be taking.
  • Magnesium should not be taken if you have MG unless expressly prescribed and monitored by your doctor, as it is known to make MG worse.
  • There are no certain foods that are known to make MG better, but dietitians generally recommend eating a healthy, well-balanced diet with as many whole foods (fresh fruits & vegetables, etc.) as possible, and limiting intake of processed foods.


Are there medications I shouldn’t take if I have MG?

  • The MGA has a list of medications to avoid or take with caution – it can also be found on the MGFA’s website at: www.myasthenia.org
  • Keep in mind that everyone responds to medication differently.  Some people can take the medications on this list with few problems, while other medications that aren’t on the list may cause your MG to get worse.  Keep track of any new symptoms whenever you start a new medication, and weigh the potential benefits & risks of each medication with your doctor before you start.


Can I exercise if I have MG?

  • Exercise can be helpful – with your doctor’s permission.  Start slow with low-impact exercises such as walking or using a stationary bicycle, and build up slowly as you are able.  Stop and rest as soon as you start to feel tired, as overdoing it will make your MG symptoms worse.  Try to always have another person with you, or at least your cell phone, especially if you are walking outside, in case you begin to get weak and need assistance getting home.  For some, excessive exercise can bring about symptoms.


Will I need to use a wheelchair or walker if I have MG?

  • Most people with MG are able to walk unassisted most of the time.  In fact, it is called an “invisible disease” because symptoms aren’t often apparent to other people.  However, some people do require the assistance of a cane, walker or wheelchair, usually temporarily and when their symptoms are worse.
  • Do not be afraid or embarrassed to use walking aids, disabled parking tags, electric carts in stores, etc. to help you maintain your strength and avoid putting unnecessary strain on your body – anything you can do that helps you conserve your energy will allow you more energy for the things you want and need to do.


How do I find a neurologist?

  • Since Myasthenia Gravis is a neuromuscular disease, it is advised that you see a neurologist for treatment.
  • Not all neurologists are familiar with treating Myasthenia Gravis or are aware of the variety of treatment options.  If you were diagnosed by your primary physician or diagnosed in a hospital setting, you can ask those doctors if they know of an MG-knowledgeable neurologist.  You can call your state’s Myasthenia Gravis Association and ask for suggestions on MG-knowledgeable neurologists.  Some state associations are affiliated with the Myasthenia Gravis Foundation of America and some are not, but all will try to assist you.
  • If you cannot find an MG-knowledgeable neurologist or neuromuscular specialist in your area, you might ask to speak with a local neurologist’s “practice manager” and ask if one of the physicians in the practice would be willing to send for the booklet “Myasthenia Gravis: A Manual For The Health Care Provider” which is sold for $12 by the Myasthenia Gravis Foundation of America, to familiarize themselves with MG.  It is also available on their website at no charge (www.myasthenia.org).  If you do not live close to a larger city where a neurologist practice exists or hospital with a neurology department and cannot travel, you could ask the same of your primary physician.


What does it mean to become your own health care advocate?

  • It is essential for those living with Myasthenia Gravis to become as informed about MG as possible and to take responsibility for medical appointments and treatment.  Gone are the days when doctors’ offices initiate contact with patients to remind of appointments, testing and follow-up.  You must develop a system for coping with MG, which may include keeping a MG Diary: a log of symptoms, what brings them on, what helps, what makes them worse.  Your MG Diary should contain a listing of medications you’re taking, with dosage instructions, including what side affects you may experience.  This diary will help you discuss your condition with your doctor.  Remember, that no two people experience living with Myasthenia Gravis in the same way.
  • Come prepared to your doctor appointments with your MG Diary, list of questions and a notebook to record relevant information.  No matter how much you like your doctor, this is not a social encounter, so don’t make small talk.  Remember that you will only have approximately 7-10 minutes with the doctor, so make the most of that time.
  • If it appears that some of your medications, IVIG or plasmapheresis treatments are not being covered by your insurance, call your insurance company and if you are not able to get approval from your insurance customer service person, ask to speak to a supervisor and then that person’s supervisor until you have the approval that you need.  Be sure and write down every person’s name that you speak with.
  • Our health care system is not always user-friendly.  If you don’t feel up to the task of being your own health care advocate, then assess who in your family or friendship network may be better suited and willing to help.

Is it safe for me to get the influenza vaccine?

  • Generally, flu shots (NOT the live vaccine) are safe for those with Myasthenia Gravis, but always check with your doctor who treats your MG to be sure it is safe for your situation.