Myasthenia gravis
I just hopped on this rollercoaster and through my trials and tribulations I hope to be the strongest me I can be - Me and MG - Riding the Myasthenia Rollercoaster
image by: Conquer Myasthenia Gravis
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"You look great today"...umm yeah...
Oh how many times have i heard those words uttered? Way too many to count... or you sound great, or "that's a handicapped spot!"...really? I didn't realize that when i put my placard up. Like i want to use the spot. Like i want to HAVE to use the spot.
My entire life, I have struggled with the proper response to compliments. "Did I sound appreciative?" "I hope my thank you didn't sound egotistical." But now, with an autoimmune disease, I have no idea how to respond. Of course the first two words are easy...a simple "thank you."
But then my mind starts going...do I explain that it took hours of rest before i had enough energy to leave the house? Do I go into the intricate…
Resources
Momenta Pharma drug improves symptoms in patients with myasthenia gravis
Momenta Pharmaceuticals reported Monday that in a mid-stage clinical trial, an experimental medicine significantly improved the symptoms of patients with generalized myasthenia gravis, a rare neuromuscular disease.
Why Was the Woman Having Trouble Seeing, if Her Eyes Were Fine?
Myasthenia (from the ancient Greek meaning muscle weakness) gravis (from the Latin meaning severe) has been puzzling physicians for at least three centuries. It was first described in 1672 by the physician Thomas Willis, who wrote (in Latin) of people who “are able at first rising in the morning to walk” but who later in the day “are scarce able to move Hand or Foot.” We now know that myasthenia gravis (M.G.) is a rare autoimmune disorder in which antibodies interfere with the message the brain sends to the muscles. The hallmark of the disease is weakness that worsens with activity and improves with rest. In many patients, M.G. will affect the muscles of the face first.
In Sickness and Health: My Illness Anniversary
The effect of the disease on my body was huge, but the games it played with my mind were worse. It took away my future and my present in one full swoop. How can anyone recover when their body is conspiring against you with such a vengeance?
Just Believe
My wish for you is to remember that no matter how difficult or impossible you may think it is to receive, you have a miracle waiting for you too... just believe.
Medicine's Subtle Art Gives A Man The Chance To Breathe Again
Doctors treat myasthenia with drugs that improve the transmission of nerve impulses and suppress the immune system. But the disease is rare enough that many doctors have never seen a case.
IVIg, Plasma Exchange, and Emerging MG Treatments
What follows is a discussion of IVIg and plasma exchange, which can be used as rescue therapy (with the goal to improve crisis symptoms quickly) or maintenance therapy (to ease ongoing severe symptoms).
Current Treatment of Myasthenia Gravis
Myasthenia gravis (MG) is the most extensively studied antibody-mediated disease in humans. Substantial progress has been made in the treatment of MG in the last century, resulting in a change of its natural course from a disease with poor prognosis with a high mortality rate in the early 20th century to a treatable condition with a large proportion of patients attaining very good disease control.
"You look great today"...umm yeah...
Oh how many times have i heard those words uttered? Way too many to count... or you sound great, or "that's a handicapped spot!"...really?
4 Tips on Celebrating a Holiday Alone
Like other friends of mine with MG, lupus, multiple sclerosis, and other illnesses, I have to weigh the joys of being with loved ones against the risks of getting a cold or the flu, which can lead to relapses, hospitalization, and weeks (or months) bedridden.
MG United
MG United began as a conversation with people in the MG community. This is what we heard. And it’s why we’re here.
Myaware
Myaware is the name for the Myasthenia Gravis Association. MGA has been around since May 1976. We support people with myasthenia and their families, increase public and medical awareness of the condition and raise funds for research and support staff.
Life with Myasthenia Gravis (MG)
A page about how my life is affected by Myasthenia Gravis (MG).
Me and MG - Riding the Myasthenia Rollercoaster
My story of living with a chronic neuromuscular disease.
Myasthenia Gravis Blog
Myasthenia Gravis Symptoms,ID Bracelets, Discussions ,Books, News, Videos and Links to Resources
Myasthenia Gravis News
Myasthenia Gravis News is strictly a news and information website about the disease.
Myasthenic Research UK
The support network for myasthenic children, young people and their families.
The Myasthenia Kid...
Life with possibly undiagnosed Myasthenia Gravis, diagnosed severe autonomic dysfunction and Ehlers Danlos Syndrome hypermobility type.
Understanding gMG
gMG can make daily activities a daily struggle. gMG is a rare disease that leads to muscle weakness and can impact daily tasks. While symptoms may start small, over time their impact can grow to be unmanageable.
WomenWithMG.org
WMMG was founded in January of 2013 with the primary purpose of offering support to women diagnosed with MG. We were the first support group created to address the specific needs of women with MG. We also work to raise awareness about MG and provide support to the wider MG community through our website here, and our Friends & Family group.
European Association of Myasthenia Gravis
EuMGA has the aims to: Promote the health and welfare of sufferers from Myasthenia Gravis, Lambert-Eaton Myasthenic Syndrome, Congenital Myasthenic Syndrome and other similar diseases of the human neuromuscular junction in the Countries of Europe. Assist and encourage the formation and development of not-for-profit organizations of patients suffering from these diseases, and their carers, in the Countries of Europe
LEMS.com
Comprehensive online resource for patients and their families regarding Lambert Eaton Myasthenic Syndrome (LEMS).
MDA
MDA leads the search for treatments and therapies for myasthenia gravis (MG). The Association also provides comprehensive supports and expert clinical care for those living with MG.
Myasthenia Gravis Association of Queensland
The objectives of the Association are to be a support group for sufferers of Myasthenia Gravis (MG), and to raise awareness of MG and raise funds for research into MG.
Myasthenia Gravis Foundation of America
The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA serves patients, their families and caregivers through a network of chapters, support groups and programs.
Myasthenia Gravis Society of Canada
We have been operating as an MG advocacy group for over forty years. We see ourselves as an MG support organization whose core purpose is: 1.To support MG diagnosed patients, their families, friends and caregivers, 2.To educate everyone to what MG is including the medical profession, 3.To support MG diagnosed patients, their families, friends and caregivers,
Conquer MG
Conquer Myasthenia Gravis (formerly known as the Myasthenia Gravis Foundation of Illinois) was founded in 1972 by a grass roots group of caring patients, family members and physicians who wanted to help patients achieve the best quality of life, while living with and managing their MG.
National Institute of Neurological Disorders and Stroke
Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means "grave muscle weakness." With current therapies, however, most cases of myasthenia gravis are not as "grave" as the name implies. In fact, most individuals with myasthenia gravis have a normal life expectancy.
MayoClinic
Though myasthenia gravis can affect people of any age, it's more common in women younger than 40 and in men older than 60.
MedicineNet
The disease prognosis is highly variable; some patients have complete remission (about 50% with thymus surgery), others have relatively normal lives with continued treatment, and others have a poor prognosis as the disease advances.
MedlinePlus
Common symptoms are trouble with eye and eyelid movement, facial expression and swallowing. But it can also affect other muscles. The weakness gets worse with activity, and better with rest.
NHS
Myasthenia gravis is a rare long-term condition that causes certain muscles to become weak. It mainly affects muscles that are controlled voluntarily – often those controlling eye and eyelid movement, facial expression, chewing, swallowing and speaking. Sometimes, the muscles that control breathing, neck and limb movements are also affected.
Patient
Myasthenia gravis (MG) was first described by Thomas Willis in 1672. It is an acquired autoimmune disease with antibodies against the nicotinic acetylcholine receptor (AChR) at the neuromuscular junction or muscle-specific tyrosine kinase (MuSK).[1] This leads to muscular weakness with easy 'fatiguability', which is worse on exercise and improves with rest.
WomensHealth.gov
MG can affect any muscle, but the muscles that control eye and eyelid movement, facial expression, and swallowing are most often affected. In some people, the first symptom is weakness of the eye muscles. In others, having a hard time swallowing, talking, and breathing can be the first signs.
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