Would you like the answer to. Given my status what is the best outcome I can hope to achieve and how do I get there?

The following resource was created by three brothers, one who had ALS. The group now has over 200,000 members incompassing almost every disease, including rare diseases like MG. The MG group now has 196 members.

http://www.patientslikeme.com/conditions/229-myasthenia-gravis provides you the ability to;
Be able to track your MG progression
Be able to monitor your response to medications/treatments
Be able to find other MG patients with similar conditions, medications, treatments, age, and many other filters.
Be able to communicate with other members
Be able print out a report of your progression for you next doctors appointment
Be able to participate in possible patient centered MG research

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http://www.youtube.com/PatientsLikeMe
http://www.youtube.com/watch?v=JkghBMFJ11o
http://www.youtube.com/watch?v=WQ2PFoHptK8
http://www.youtube.com/watch?v=btbohVeuWiM
http://www.youtube.com/watch?v=v6eGnYY9mWQ

PatientsLikeMe Philosophy
Openness is a good thing.
Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, were more excited about our Openness Philosophy. It may sound counterintuitive, but its what drives our groundbreaking concept.

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also cant get the information they need to make important treatment decisions. But it doesnt have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn whats working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients lives better.
Will you add to our collective knowledge and help change the course of healthcare?

http://news.patientslikeme.com/faq

PatientsLikeMe Calls For Researcher Participation in New Open Research Exchange Platform
Company Names Scientific Advisory Board for Worlds FirstOpen-Participation Research Platform for Patient-Centered Health Outcome Measures
CAMBRIDGE, Mass. May 20, 2013Today, PatientsLikeMe announces an open call for medical researchers to be among the first pilot users of its Open Research Exchange (ORE) platform (www.openresearchexchange.com). ORE puts patients at the center of the clinical research process and allows researchers to pilot, deploy, share, and validate new ways to measure diseases within PatientsLikeMes community of more than 200,000 members. The new platform and call for participation is being spotlighted today at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference in New Orleans.

Supported by funding from the Robert Wood Johnson Foundation, PatientsLikeMes ORE is available for free to any researcher who wants to:
Leverage new, specialized tools to quickly design and field measures based on patient questionnaires;
Rapidly test new measures with real patients in multiple iterations, and get feedback on their instrument development;
Be among the first to browse and contribute to the worlds only open library of patient-reported instruments and health measurements.

http://www.youtube.com/watch?v=UdYPBFb1P1g

Word of caution the information gathered is shared.

PatientsLikeMe helps others across disciplines in the health care industry learn from what happens in the real world. We collect de-identified patient data and work with non-profits, academic researchers and pharmaceutical companies to better understand which health care treatments work, or dont, and what is still needed. We were founded on a theory of openness and encourage patients to share what they are comfortable sharing. Like all websites, we have security procedures in place and restrict how much we share with partners.

The information patients share about their experience with diseases is sold to PatientsLikeMe partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance or medical services. This is, in fact, the only way we make money. Because we believe in transparency, we tell our members exactly what we do and do not do with their data. They support our not-just-for-profit business model because it can accelerate research like never before.

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I have found that tracking my symptoms, responses to medications/treatment and daily activities triggers greatly help with my follow up medical appointments. These resources allow me to provide the big picture of what has happened since my last appointment.

I hope you will consider adding PatientsLikeMe as one of you online resources. The more MG members will only add to the invaluable data already provided.

It is also my desire that we as a group can champion MG research that we can activity participate in. Example..How many MG patients are seronegative? How were they diagnosis and what can be done to improve this process?

Please add any similar resources you use.

Hope we can all get the answer to the above question.

Bruce