by Dr. James F. Howard, Jr.

As a physician specializing in the treatment of myasthenia gravis (MG), a rare, debilitating neurological disorder, I witness on a daily basis the adversities my patients face. Imagine being a hard-working, active adult—a mom who drove her kids to school every day, who liked to garden and exercise—suddenly faced with a disease that makes it difficult to see, walk or even talk. This is the reality of MG. It steals muscle strength to the point where those living with the disorder can no longer do the things they love. But many fight back, and I am consistently inspired by the strength and perseverance my patients exhibit to overcome these challenges and to not let their disease define them.

June is an important month for the MG community because it marks Myasthenia Gravis Awareness Month—a time when the community can come together, share experiences, and increase awareness for this rare, debilitating disorder. For me, this month provides a key opportunity to leverage my experiences seeing and treating patients with MG to elevate the public’s understanding of the disease and call attention to the special challenges faced by those living with it, including the need for improved diagnostic approaches and new, effective treatment options.

 

Diagnosing and Treating MG

In the United States, a rare disease is one that affects fewer than 200,000 patients.1 While the number of patients affected may be small, the impact of rare diseases on patients, their families, and society is profound.

Like other rare diseases, people living with MG often face a long road to diagnosis since many physicians are unfamiliar with the signs and symptoms of MG. As a result, it may take patients several years before they are accurately diagnosed with MG and can begin treatment.2

Even then, there is no cure for MG, meaning people living with this disease cope with it over the course of their lives. While there are treatment options available that can help manage symptoms in many patients, some patients find that their disease is not adequately controlled with therapies. In fact, as many as 15 percent of MG patients have refractory MG—meaning that despite current treatment, they continue to suffer from debilitating muscle weakness that severely impairs their ability to engage in simple daily activities.3

 

Living with MG

Significant muscle weakness is the hallmark symptom of MG, but no two people experience MG exactly the same way. Basic functions that many take for granted—like chewing, swallowing and walking —become difficult. Other common symptoms include drooping eyelids, blurred vision, slurred speech, and weakness in the arms and legs. Between 15 and 20 percent of MG patients will experience a “myasthenic crisis”—difficulty breathing that can require hospitalization and may be life-threatening.4

While the physicality of this disorder is debilitating, the emotional strain MG patients experience can be just as devastating. Many MG patients feel isolated and worry they are losing their identity. Because of their symptoms, many have had to give up their careers and may feel like a burden to their families both financially and socially. Relationships and friendships can suffer since any day can bring debilitating symptoms that force patients to cancel plans. The ability to travel, or even take a quick trip to the grocery store, may diminish, further compounding feelings of isolation.

 

What’s Next for MG

For MG patients, learning to cope with a lifelong disease can be daunting, so it’s important to focus on cultivating a support system to help overcome challenges. Family, friends, fellow MG patients, and physicians all play a role in helping patients get through difficult times and cheering them on through the great times.

Today, I am optimistic about what the future holds for people living with MG. Unlike some rare diseases, MG is an active area of research, with new clinical trials under way. I am especially hopeful that new research may benefit patients with refractory MG—who continue to suffer without adequate treatment options.

My hope for the MG community is that the scientific advances over the past 30 years—and particularly today’s research—will lead to a better quality of life for patients with this disorder. Please join me today, and every day during the month of June, in celebrating Myasthenia Gravis Awareness Month and spreading the word about this rare disease.

For more information about MG, including education, support, and resources for people living with MG and their families, visit the Myasthenia Gravis Foundation of America website at www.myasthenia.org.

James F. Howard Jr., M.D., is a Distinguished Professor of Neuromuscular Disease and Professor of Neurology & Medicine at the University of North Carolina at Chapel Hill School of Medicine. 

 

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References

  1. National Organization for Rare Disorders. Resources & FAQs: https://rarediseases.org/for-patients-and-families/information-resources/resources-faqs/
  2. Conti-Fine BM, Milani M, Kaminski HJ. Myasthenia gravis: past, present, and future. J Clin Invest. 2006;116(11):2843-54.
  3. Suh J, Goldstein JM, Nowak RJ. Clinical Characteristics of Refractory Myasthenia Gravis. Yale Jour Biol Med. 2013;86: pp.255-260.
  4. Wendell LC, Levine JM. Myasthenia crisis. The Neurohospitalist. 2011;1(1):16-22.

20 thoughts on “Rare Insight: A Physician’s Perspective on Myasthenia Gravis”

  1. Bill Suphan says:

    This really nails it all. Having to disappoint people at the last minute, the loss of friendships and the fact that I can’t walk very far is tough for others to understand.

  2. Beverly Porter says:

    It has changed my life but am still kicking and screaming! I have hope.

  3. Nancy says:

    I refuse to let MG define me but the struggle is intense and like nothing I have ever had to face. I am interested in any clinical trials or help in combating this dreaded condition!

  4. Nancy Lasko says:

    My1st visit to a neurologist forM.G. he didn’t take time to explain anything to me , he asked me 3 questions. What do I want pain meds? Sleep meds, or anti depression meds? The same place offered support group, where I was told to apply for disability now! Not even given any tips on how to do life with M.G. in general.No suggestions on alternative energy treatments ,just take prednisone & immune suppressing drugs. They served the absolute worst foods a person with immune system issues should eat! I have gotten no help whatsoever from anyone from a MG association I am so disappointed I have no where to turn localy!

  5. Anne Adriano says:

    This article hits home for me. My Mother was diagnosed with MG in 1982 and managed to live her life to the fullest in spite of the limitations and challenges of having an MG. She’s a fighter and never gave up! She enjoys her life one day at a time and thank you for your insight! I appreciate it so much!

  6. Thomas Vance says:

    Has there been any research on the effects of using medical cannabis to treat it? Any users out there trying medical cannabis for MG?
    Medical cannabis works with receptors throughout the body. That ois why it is effective for so many conditions!

  7. Akash Dhenki says:

    I was diagnosed with this rare disorder in the year 2005 and it was almost out of control with anything that was tried. Finally I had to go through thymectomy in 2006 and lived on medicines for a year. I went to college after that and completed my Engineering in 2011. Got into a job and now have migrated to Canada from India and am working in the investment industry. I have had no symptoms since my surgery and am able to work normally and have even gone back to playing all kinds of outdoor sports which I loved to as a kid. I know myself and my body better after this disease. Hope this story inspires other MG patients to get up and fight. Its gonna be a challenge but dnt give up to it.

  8. Jamie jumper says:

    almost four years ago my husband came home with an eyelid taped open with a Band-Aid he had slurred speech trouble chewing and swallowing I thought he had a stroke he had hand tremors and begin falling took a year to get a diagnosis spent 3 weeks in intensive care with respiratory problems they treated him with IVIG which took his kidney function we did dialysis at home every night for two and a half years he decided to get on the transplant list my step-daughter was a match and when we went to Birmingham they found both of his heart valves bad he had open heart surgery to fix those and only lived 5 weeks his immune system was compromised and his lungs could not fight off the flu it he was a rather severe case and faughlt it with every inch of his being

  9. Patricia Martin says:

    Hi Ave got mg and behect disease together is there anyone out there has these to

  10. susieQ says:

    my beginning years was horrific with MG. I am on imuran and 10 mgs prednisone. I was recently told by my mda neuro that I am doing real well…drug induced remission. you have to shed the stress all that you can. i was dxed 1997,intubated and thymectomy. Don’t let others negativity affect you. Be happy…also change of life occurred and I also feel hormones played a role. Enjoy your life.

  11. Freya Koss says:

    Nancy and everyone else on this discussion list,
    Please listen to my interview about my diagnosis of MG in 1998 and recovery. I also was offered pregnizone “to fix my eyes” after being suddenly struck with double vision and diagnosed with MS,Lupus and finally MG. I then discovered that the symptoms were the result of having been mercury poisoned during the drilling out and replacement of silver colored dental fillings, which are 50% mercury, a known neurotoxin mercury. I slowly recovered after having my fillings removed safely and a detox program. You may contact me for additional information through my Facbook page. Also, I was interviewed at a MG Walk in NY in 2011. I hope that you will consider this possibility.That is not to say that there may be other contributing factors to MG, such as a genetic predisposition.

  12. martin says:

    take heart Bill, everything will be okay, just never loose your focus to get better.

  13. Bill Suphan says:

    Thanks. I have learned a lot by reading the experiences of others. One seemingly minor thing was a lady who posted that by the time she showered and got ready to go somewhere she was too tired to go. That fit me exactly and now I know others go through what I do.

  14. I believe MG can not be avoided that easily,just try to avoid some simple triggers like Emotional Stress and Exposures to extreme temperature

  15. Pallavi says:

    HI Akash,
    Your comments clearly are the most encouraging ones here after Dr. James F. Howar Jr.

    Coping with MG for the past 11 years with 3 surgeries and 3 thymomas and radiation and chemo and pneumonia and a myasthenia Crisis, I have survived it all. Its taken me a decade to understand that tension and anxiety is the worst enemy of MG and nutrition , rest and proper exercise and yoga-meditation our best friends.
    I have recently started sharing my personal experiences for maybe fellow travellers to benefit from on my blog miracleme.cpallavirao.com

  16. Debby Godwin says:

    My husband was diagnosed with MG back October 2016. What a change of life occurrence this turned out to be. He almost died right before my eyes and there was nothing I could do. The neurologists at the hospital, as well as the nursing and other hospital staff were wonderful, helped us get through the worst of getting him stabilized. The worst things he deals with now are the side effects of the medicine. He is taking prednisone and the generic form of Mestinon. He coughs all the time and has terrible diarrhea, I would love some advice to help him get more comfortable or how I can help him with the side effects.

  17. Akber Khan says:

    Hi. I was diagnosed with MG early last year. I was put on Predisolone and Mestinon. i started taking Chinese herbal medicines along with it and brought the steroids to 5 mg a day and reduced the Mestinon also. the stress and and pressures of my work took their toll and had a crisis last month. Now they want to out me on Mycophenolate mofetil which I don’t want to do. I feel the Chinese herbs along with low manageable level of steroids help me. i also want to try cannabis oil but don’t know how to get it. the the What should I do..

  18. Steve Linsky says:

    Cellcept or Mycophenalate has done an amazing job for me. it takes about 3 months to kick in but, when it does you can minimize Mestonin ( I did completely.. Do it! worth the wait

  19. Bill Suphan says:

    This is something I should know but can I get a flu shot with MG?

  20. Walter Kimball says:

    I understand your problems and I would suggest you talk to your neuro about making sure you are on enough Cellcept and do what you can about getting the Mestinon level down. That is what gave me the diarrhea. I have gone from 360mg per day to 90 mg per day and I feel better with no diarrhea issues to speak of. I also have COPD so I cough a lot and have mucus issues, but they have gotten better with the reduction of Mestinon. Contact me anytime directly at wsk176@gmail.com

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