Douglas Manning

I was 58 when diagnosed with Achr+ MG. I began with double and blurred vision, difficulty speaking for more than a few moments at a time, chewing fatigue, swallowing issues, that progressed to sided weakness, and fatigue. It progressed quite quickly from first symptoms to my first “crash” about 6 weeks later. I do not believe anyone (except the…[Read more]

Unrepentant optimist and lifelong learner.

I have a two-part strategy to help with these paperwork jungles.

1) Like David in this thread has said, I am also most fortunate to have my spouse attend almost all appointments with me, so I begin forms and she completes them if I tire or cannot see well enough.

2) I am able to keep most of my medical care within the same medical system, and…[Read more]

I’ve had ports (Powerflow Apheresis ports) in my upper right chest since the summer of 2018. They have been an absolute benefit for me as my gMG is tough. I need biweekly Apheresis treatments and eculimazab infusions. It makes access so much easier, nearly painless, and virtually foolproof. It is also wonderful to have my arms free during…[Read more]

Wow! You’ve encapsulated the whole of the generalized MG experience. Like you my “work” was in large part how I identified myself. I saw that role hammered away both by my age and the disease. MG is such a ‘silent’ disease, it affects us in such profound ways and yet from the outside people say, “Well you don’t look sick….” Ugh, how depressing,…[Read more]

I think the Muscular Dystrophy Association gives the best explanation of the conundrum that MG is not hereditary but has a genetic component:
What is the genetic susceptibility in MG?
Although MG and other autoimmune diseases are not hereditary, genetic susceptibility does appear to play a role. It seems likely that genetic factors also…[Read more]

I feel remarkably fortunate in my journey. At the first onset of symptoms in 2014 I knew nothing whatsoever about MG. I had very swift and severe onset of symptoms and at age 58 I mostly feared I was having a stroke with the vision, swallowing, sided weakness all happing at once. At the ED, once stroke was ruled out the Opthalmology resident after…[Read more]

Peanut butter cups, peanut butter M&Ms! So easy to eat – no worries about chewing fatigue – just holes in my belt, 😂

I really appreciate the comments regarding:

1) The journey for each of us with MG is unique for each of us,

2) The “toolkit” of medicine available to physicians is filled with medicines that met a standard that was a patient receiving the medicine during clinical trials had an improvement that was statistically significant compared to not taking…[Read more]

Life’s ultimate marathon

The chances for joy just go on and on and on.

<p style=”text-align: center;”>I’ve had both plasmapheresis and IVIG treatments. I am Achr+ and have fun the full gamut of treatment schemes since first being diagnosed and then experiencing my first “crash” about a month after first symptoms 8 years ago. Initially high dose Prednisone and plasmapheresis got me past the first crash without…[Read more]

My neverending journey

The impact on my ability to sing is probably my single greatest “loss” with MG. I can deal with the more limited mobility issues, vision issues, swallowing issues and weakness that pop up, but one symptom that is with me always is getting breathless, losing control of my breath, slurring words after several minutes and hoarse and hushed output.…[Read more]

<p style=”text-align: left;”>I think the need for ports is really related to the evolution of your case of myasthenia gravis. In my case MG has been an ever present and relentless traveler in my life’s journey since 2014. The neurologist and team that support me have been positive, helpful, and forward-looking. I have been what I hope is a good…[Read more]

Hello. For me, swimming is my absolute go to for exercise. I can stretch, do water aerobics, and swim as many laps as I am able. One of my favorite things to do is just tread water. Having been a swimmer my entire life, I find this relaxing and allows me to breathe deeply using the light pressure of the water on my chest as resistance to taking…[Read more]

What great posts highlighting just how bewildering this condition can be! I am trying to conjure up a “D” word for the invisible nature of the disease. Maybe its “Doesn’t get seen by most people”? How did I change from hiking, running, lifting, and standing for hours at a time and then suddenly in the span of onset and the first “crash” seemingly…[Read more]

What a great read! My approach has perhaps been a little simpler. My family often jokes that I am too optimistic and as a result, I may on occasion “overshoot the mark”. Regardless, I wake up each day imagining what is possible, not what I cannot do. To that end, my family and I have taken the plunge into researching our family story. We’ve had…[Read more]

As I sat in my chair today for my final treatment of 2021, I could not help but reflect on the season. Thanksgiving is past and we are coming to the end of Advent Season and what follows will bring us back to the beginning of the great promise. We celebrate our blessings before we renew once more the journey on our road to redemption. So, I begin…[Read more]

A reply another forum member Norm is so valuable I think. That is to trust your care to a neurologist who has experience with patients with MG. If you are fortunate to have that specialist close to you, so much the better. In my case we reached out to Johns Hopkins neurology for a review of my case when it seemed that I was at point where progress…[Read more]