Part 2- The Journey of Perseverance My Diagnosis/ MG and Peripheral Neuropathy

by Manley Lavender

Myasthenia Gravis (my-us-THEE-nee-uh GRAH-vis), sometimes called MG, is a rare autoimmune, neuromuscular condition, causing muscle weakness and fatigue.¹ In fact, the name literally means “serious muscle weakness,” which is the primary symptom.² There are two main categories for symptoms of MG: ocular and generalized. Ocular MG affects the muscles controlling the eyes and eyelids.³ Generalized MG (gMG) can affect muscles throughout the body.¹

There are different types of MG. The most common type is called anti-AChR antibody positive gMG, which accounts for about 85% of people who are living with MG.⁴

Second diagnosis: Peripheral Neuropathy happens when the nerves, located outside of the brain and spinal cord, the peripheral nerves, are damaged. This condition often causes weakness, numbness and pain, usually in the hands and feet. It also can affect other areas and body functions, including digestion and urination.

People with peripheral neuropathy usually describe the pain as stabbing, burning or tingling. Sometimes symptoms get better, especially, if caused by a condition which can be treated. Medicines can reduce the pain of peripheral neuropathy.

Upon receiving my multiple diagnosis, my first questions to my muscular neurologist specialist was, “What’s the next step? What does this look like, medical treatment options, physiotherapy, community support groups, lifestyle changes and so on?” Thankfully, my medical team is part of a research training hospital. They have access to the best treatment in the world for MG and peripheral neuropathy. Knowing I had a very strong medical team behind me, still meant I had to go through the process of learning and understanding how/why my life has changed and will continue to evolve. Still, not knowing what my future will look like, I was reminded by my medical team, it is highly unlikely I will be able to return to the level of physical activity I once took for granted. This means things like: hiking, cycling, running, returning to work as a compliance consultant, or, just performing regular family community activities.

As part of this learning curve, I had to grasp and understand everything about MG and peripheral neuropathy, to explain and describe everything to my family and friends. I'm not sure what was harder, getting the news of my diagnosis, understanding the diagnosis and treatment, or having the proper words and thoughts to explain a disease which is hard to understand and explain. MG is considered a rare disease, which means 1 in 10,000 people in Canada are diagnosed with it. It is commonly known as the snowflake disease, implying every MG patient can present different signs and symptoms which also reflects their treatment plan. So, no two MG patients will have the same treatment plan. Depending on your medical support network, which includes: a specialists GP Doctor, a physiotherapist, nutritionist and other tertiary support people, everyone's treatment plan can be and will be different. Furthermore, depending on where you live in Canada this can also look drastically different, as the resources for the rare disease will be different. Fortunately though, in Canada, we do have organizations which provide excellent resources for rare diseases like MG, for instance, Muscular Dystrophy of Canada or the Canadian Organization for Rare Diseases/C.O.R.D). As well, your own medical team can provide resources upon your diagnosis. Furthermore, other organizations like MGA, MG FA (American Assoc) and MG Society of Canada, will offer online websites and newsletters, updating treatment and other valuable resources

Next article; The real impact, living with MG