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Living with Myasthenia Gravis from a Patient's Perspective Blog - Patient information, tips, and tricks for coping with the disease.

Welcome to my humble blog about Living with Myasthenia Gravis from a patient’s perspective.  Through my own Myasthenia Gravis story, I’ll share tips for dealing with MG. I cover what treatments I’ve tried and give symptom descriptions “from the inside.” I’ll share my own Myasthenia Gravis patient stories gathered since my long sought diagnosis in 2009. I felt it fit to write my own Myasthenia Gravis patient blog, because this so called “Snowflake Disease” is different with each of us. The Myasthenia Gravis information I offer in my blog is an echo of doctor’s advice combined with first hand experience of how this advice fits into an actual MG patient’s lifestyle. My blog will hopefully also offer up moral support for Myasthenia Gravis patients and caregivers in showing that they are not alone. From my diagnosis, to near myasthenic crisis, IVIG infusions, and being immunocompromised in the time of COVID-19 Coronavirus pandemic, get an inside glimpse of living with Myasthenia Gravis. DISCLAIMER: This blog is not a diagnostic resource. It is a recounting of my own experiences for the purpose of Myasthenia Gravis awareness, and support for other patients. Always refer to your doctor’s advice and diagnosis when handling your own symptoms. I recommend this Australian Myasthenia Gravis website for straight medical facts and official Myasthenia Gravis information.

medical advice; patient forums; social media groups; bad; advice

The Bad Side of Patient Forums / Social Media Groups

In searching for medical advice, be careful about involvement with online medical patient forums and support groups on social media. Not all online medical interest groups and forums maintain high standard of enrollment and moderation. Individuals certified in their knowledge and direction are musts for a good group. Without proper vigilance and critical thinking, you may encounter dicey situations or be influenced by inherent bias. This article delves into the bad side of online patient forums and medical interest groups for patients with rare diseases. I write from my own experience.

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social distancing; Coronavirus Myasthenia Gravis; COVID-19 Myasthenia Gravis

Coronavirus and Myasthenia Gravis

This blog post is short and sweet. Is the Coronavirus still circulating and you have Myasthenia Gravis? If so, social distancing is imperative. It is an absolute MUST that you stay indoors at home, while also not inviting people in. Self-sequestering saves lives and lightens the load on your area’s health system. If you do venture out, be sure it is away from the public. Take advantage of any opportunity to have groceries and necessities delivered, or at the very least, travel along with someone to go shopping, but send them in with the list. The following post briefly explains how the virus and MG may interact while also suggesting some positive ways to get through this rather unusual and unfortunate epoch.

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Patient Story and Advice Blog Living with Myasthenia Gravis through Art post titled

Caregiver Guidelines for Myasthenia Gravis

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.

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Living with Myasthenia Gravis Blog - Things to Know About IVIG - Melasdesign Blog - Susan Hicks

What to Expect During IVIG Induction Treatment

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.

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Living with Myasthenia Gravis Blog - Nearing Myasthenic Crisis blog cover from Living with Myasthenia Gravis first hand blog

Near Myasthenic Crisis

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.

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