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Douglas Manning replied to the topic Differences Between Plasmapheresis (Plasma Exchange) vs. Intravenous Immune Globulin (IVIG) in the forum Healthcare and Myasthenia Gravis 4 days, 8 hours ago
<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]
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Douglas Manning replied to the topic Describe Your Journey With MG in 3 Words in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 week, 1 day ago
My neverending journey
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Douglas Manning replied to the topic Myasthenia Gravis' Effect on Singing in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 month, 3 weeks ago
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]
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Douglas Manning replied to the topic Port to Help Ease Myasthenia Gravis Treatments in the forum Healthcare and Myasthenia Gravis 2 months ago
<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]
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Douglas Manning replied to the topic How Do You Remain Physically Active? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 4 months, 1 week ago
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]
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Douglas Manning replied to the topic D Symptoms of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 4 months, 3 weeks ago
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]
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Douglas Manning replied to the topic Hobbies Since Myasthenia Gravis: Let go, Modified, Discovered in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 6 months, 2 weeks ago
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]
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Douglas Manning replied to the topic End of Year Reflection in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 7 months, 3 weeks ago
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]
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Michelle and
Douglas Manning are now friends 8 months ago
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Douglas Manning replied to the topic Mayo Clinic, Johns-Hopkins, Cleveland Clinic type centers; experiences/advice? in the forum Healthcare and Myasthenia Gravis 8 months ago
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]
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Douglas Manning replied to the topic Additional Diseases/ Illnesses on Top of Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 8 months, 1 week ago
What an interesting topic! As I live my life as a patient with generalized MG, my life has all its chapter written before the disease where my only comorbidities were Celiac disease and carrying some extra weight. The chapters I’ve written since have been full of the ink smears of ’caused-morbidities’. I’ve gained weight, developed cataracts,…[Read more]
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Douglas Manning replied to the topic Experience With Feeding Tube in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 9 months, 2 weeks ago
I’ve had experience with feeding tubes, ng tubes, and central line nutrition.
Central line nutrition is far and away the most expensive and was used only when a crash was so severe that the hospital stay and recovery looked to extend for weeks. Although intrusive it is easy to live with and allowed me to work with speech therapy to restore my…[Read more]
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Douglas Manning became a registered member 1 year, 1 month ago
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Hello, Douglas! We are thrilled to have you as part of our inclusive and judgment-free community of MG patients, caregivers, and families! Within the Myasthenia Gravis News Forums, we implement a safe space to share and discuss experiences, information, and news and offer guidance and support. Thank you for your service! It is lovely to hear that…[Read more]
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