Welcome to my humble blog about Living and Coping with Myasthenia Gravis from a patient’s perspective. Through my own Myasthenia Gravis story, I’ll share tips for dealing with MG, including information on treatments, with symptom descriptions “from the inside.” I’ll touch on benefits and pitfalls of the medicines and approaches I’ve tried since my long sought diagnosis in 2009. I’ll also pepper in a little of my own art as part of a HUGE encouragement for sufferers to distract themselves away from illness as much as possible. We are all more than our illness, so long as we believe it ourselves. I hope my general story will help widen the somewhat narrow amount of information available online about the disease for patients’ and caregivers’ sake. I wish to instill hope in others diagnosed with Myasthenia Gravis (and their caregivers) they are not alone.
On May 1 I had my first ambulance ride, rescued by EMS, nearing Myasthenia Crisis. I’ve been inspired to share Myasthenia Gravis information from a patient’s perspective in this blog. My “too close to myasthenic crisis” story and blog kick-off follows.
A Myasthenia Gravis patient’s 20 year trek to get a correct MG diagnosis, including examples of misdiagnosis, descriptions of diagnostic tests, and personal recollections of dealing with the process.
If you’ve had this treatment suggested for Myasthenia Gravis, it’s likely that lesser treatments are failing you. Typically, Mestinon and / or steroids might not work, or be outruled. This treatment can be a big step for MG patients, as it requires a hospital stay for the blood antibody serum infusion. Thoughts of chemotherapy may come to mind. Scary! Here I will outline my experience undergoing the initial IVIG introduction, and give pointers for getting through follow up treatments.
Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself.
Wondering about MRI noise level at Georgetown University Hospital? As of June 19, 2019 Georgetown University Hospital Radiology offers music during MRI tests via FM
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