If you have a question about advice or a diagnosis you have been given by a physician, it is always wise to get a second or third opinion. It could even save your life. There is a lot of misinformation on the Internet, but also some excellent information. One of the best resources is the Mayo Clinic at www.mayoclinic.com. I now refer all neuromuscular cases to Dr, Selcen at the Mayo Clinic because there are few well trained neuromuscular specialists in the U.S. Other countries do a far better job than we do with these patients. For information about cancer, the American Cancer Society is worth checking but I would want to check with another oncologist about any cancer diagnosis. I did this for my daughter when she was diagnosed with breast cancer. Sadly, the care she received at the Cancer Center ins New Mexico was very bad resulting in her death. WebMD is usually an excellent source www.webmd.com. Specific diseases have web sites such as the American Diabetes Association, www.diabetes.org.
If you can get a second opinion from a MD, who is a specialist in the disorder you want to know about, that is best. Never be afraid to do lots of research and ask a lot of questions. When I was in private practice and wanted answers, I always called one of the top specialists in the field. I found this an easy thing to do. Usually the top experts are most generous with their time. I still help people around the world find specialists for children or adults with neuromuscular disorders and am glad to do so.