Myasthenia Gravis

Myasthenia Gravis ( my-us-THEE-nee-uh GRAY-vis) is a rare chronic autoimmune neuromuscular  disease that impacts the voluntary muscles.   Myasthenia Gravis literally means grave muscle weakness.  The first documented case of Myasthenia Gravis was Indian Chief Opechankanough in 1644!  Unlike other diseases we haven’t seen a modern day celebrity come out and say they have myasthenia gravis so you are our celebrity, warriors and heroes. 

Myasthenia Gravis is not contagious.  It is most commonly found in men over 60 and women under 40.  It impacts all ethnic groups however due to health disparities and inequities minorities are delayed in getting diagnosed. Our mission is to change that.  Myasthenia is one of over 7000 rare diseases.  

Myasthenia Gravis is most commonly diagnosed my checking for abnormal levels of acetylcholine receptor antibodies (AChR), muscle-specific tyrosine kinase (MuSK) or low-density lipoprotein  receptor related protein 4 (LRP4).  There is also another type of antibody called agrin that you may be testes for.   

Double-seronegative Myasthenia Gravis (dSNMG)

There is also a whole community of people who do not have any currently known biomarkers however have all of the classic symptoms of myasthenia gravis.   

A repetitive nerve stimulation or single fiber electromyography (EMG) may be used to detect impaired nerve to muscle transmission may be also considered.  This is an extremely uncomfortable test and hopefully you only have to get it done once.  

 Some cases of MG are diagnosed from having a chest CT or MRI which shows if there is a tumor on the thymus gland called a thymoma.  Don't panic as these tumors are usually non cancerous.  Having this surgery stops the production of autoantibodies that attack the muscle nerve connection.  About 15% of MG patient develop a thymoma.  Surgical intervention may be required.  Weigh your options of technique used.  Ask your doctor to explain transcervical, transsternal and videoscope based on your individual case.

 Lastly, a neurological examination may reveal decreased muscle strength or impaired eye movement. Some people experience MG only in their eyes while other experience more generalize symptoms.

 People with a diagnosed with Myasthenia Gravis may experience one or more of the symptoms referenced below.  These symptoms may come on all at once or take years to develop.  Some of the symptoms may get better with rest while other symptoms may require medication, immunotherapy, supplements or lifestyle modification.  Each person diagnosed with MG experiences the symptoms differently, this is why it is referred to as the snowflake disease.  We are all very unique in the way MG shows up in our lives.  Additionally, people diagnosed with MG do not all respond the same to the various treatments.  Don't let this discourage you.  Just keep searching to find what works for you.  

Common MG symptoms:

Double vision

Blurred vision

Ptosis (Drooping eyes)

Changes in facial expression 

Difficulty Swallowing

Fatigue

Shortness of breath

Difficulty   chewing

Difficulty walking

Impaired speech

Difficulty smiling

Difficulty talking

Muscle weakness in neck, arms, legs, hands or fingers

Lifestyle changes that help improved MG:

Avoid heat and humidity 

Avoid or proper stress management

Rest and Recover - Allow your body a chance to get the rest it needs

Avoid excessive cold weather