Health Team

Myasthenia gravis often misdiagnosed, misunderstood

Posted June 24, 2010

— A drooping eyelid could be more than just a sign of aging. Physicians said it could indicate someone has myasthenia gravis.

The symptoms of the autoimmune disease can be vague, so many doctors misdiagnose it and some patients might go without proper treatment for a long time.

Dr. James Howard, a neurologist at the University of North Carolina at Chapel Hill, said symptoms of myasthenia gravis include chronic muscle fatigue, weakness, blurred vision or double vision, slurred speech and difficulty chewing or swallowing. The only visible symptom, however, is a droopy eyelid.

The disease occurs when the body suddenly doesn't recognize the nerve receptor sites on muscles, Howard said.

"The body mounts an immune attack and tries to reject that. The result is nerve muscle communication is impaired," he said.

Physicians still don't know what causes the disease and who is most at risk.

It's not known to be inherited, but it occasionally affects more than one member of a family. Most patients are older, but it can occur in younger people as well.

Even after they're diagnosed, some myasthenia gravis patients can feel alone and misunderstood.

Droopy eye could be sign of myasthenia gravis Droopy eye could be sign of myasthenia gravis

Patient Jimmy Prince formed a support group for people with myasthenia gravis. He said he had never even heard of the disease when he was diagnosed four years ago.

"When he told me what it was, I had no idea," Prince said.

June is Myasthenia Gravis Awareness Month, and other members of the support group said they like having each other to lean on.

"We relate to each other and try to support each other," Prince said.

"It's just a wonderful, supportive atmosphere," Marisa Menold said. "I'd like to continue going because I appreciate their friendship."

With proper medication, myasthenia gravis can be managed. Treatments are tailored to each individual based on their symptoms and the severity of the disease.

The members of Prince's support group are all on medications to reduce the weakness and fatigue, but they've all had to adjust to a new pace.

"If I don't take a two- to three-hour nap in the middle of the day, I can't function," Lyndsey Peterson said.

"You've got to take a nap. You've got to be aware of the hot weather effects, and we're into that right now," George Nader said.


This story is closed for comments.

Oldest First
View all
  • fourfivesix Jun 28, 2010

    oh, i forgot to include that since my surgery i have since started section hiking the appalachian trail, 3-5 days at a time carrying a 33lbs pack.

  • fourfivesix Jun 28, 2010

    dr. howard is my MG doctor too. he is by far the best doctor i've ever had. i was diagnosed in 2002 when i was 20 and had a trans-sternal thymectomy in 2005. i recovered to almost 100% compared to how i felt before. thankfully i was diagnosed fairly quickly compared to most others. i went from an ENT doc, neurologist, to dr. howard within a year (although i'd had symptoms for 2-ish years). i'll be 28 this year, and my husband & i are talking about kids. it's a little scary b/c we don't know what to expect, but we're very hopeful. i still have the occasional ptosis, and get fairly weak when i catch a cold, but i can deal. the mestinon helped but the side effects were too rough on my system.

    thank you dr. howard!

  • blh638 Jun 25, 2010

    I have been Dr.Howard's patient for over 20 years. I was diagnosed with MG at the age of 19. I was refered to Dr.Howard by my opthomalogist. I went five years undiagnosed because no one would listen to me about my symtoms. Myasthenia Gravis is very hard to diagnose but once you have the proper diagnosis you can live a normal life. I am one of the lucky ones. I have been blessed with twins and I have not had any symtoms for almost 19 years. Dr.Howard has always been there for me and my family.I am physically active playing soccer,ice hockey,golf,basketball and fish. The reason for my success is having my thymus gland removed and being very knowledgeable about my condition. Thanks to Dr.Howard. A doctor that listens to his patients and genuinely cares.

  • bsrd03 Jun 24, 2010

    My oldest daughter was diagnosed with MG after going into labor with her daughter and receiving a dose of meds for her high blood pressure. Apparently meds brought this underlying disease to life. She has been through so much with this disease including the surgery Doctor Howard talked of. I want to say that Dr. Howard is a wonderful doctor who truly makes a difference in the life of his patients. He is her doctor and has always given her great care and aided all of us in understanding this little known disease.