Research
Ever since I was diagnosed with a rare disease, named of all things - Myasthenia Gravis - I’ve learned to do research. I started out at the library because that was the way I was used to doing it. Then as I realized the books were old and the information was outdated I began to use the internet to learn about this disease. When I did I was able to find out about the Myasthenia Gravis Foundation which then helped me to locate a specialist for this neuromuscular disease.
As my diagnoses increased I researched more on the internet. I learned what sites were from accurate medical authorities and what were sited trying to sell the latest cure-all. My neurologist suggested staying informed of new treatments, support groups online, and any new information online. I’m one of the lucky ones. Some people with chronic illnesses have doctors who dislike when their patients do any type of research.
Some suggestions for anyone doing medical research are to keep it in perspective and to look at it in the framework of as much legitimate information you can find. Do talk to your doctor about what you’ve found if you feel it is something helpful. Find some sites where people who have the same diagnosis meet and hear their opinions. Be careful with that too. Some people on social medical sites are there to sell something.
Keep your eyes open for snake oil salesmen. They may pitch the latest juice, plasma cutting, a vitamin or even some type of counseling that you can only get at one certain health resort.
My dad has Myaesthenia Gravis too. He had it diagnosed at about the same time there was an episode of House featuring it where the person’s lung muscles stopped working. Yeah, that didn’t terrify us. Fortunately it’s under control although his steroid intake is far higher than he’d like.