How do caregivers know the treatment provided by physicians is the best and most correct?
My husband of 53 years passed away from MG after doctors fumbled around attempting to find ways to treat this disease, putting him through months of in-and-out of the hospital, four surgeries to include an eye lift, and extensive physical therapy sessions. The family deeply regrets trusting doctors more than trusting the Internet.
The short answer to your question is you don't. I'm lucky enough to be near the University of Michigan medical college. They have a great neurological department. I advise anybody if possible find a teaching medical college with a great neurological department. Also at Michigan State university they have a Myasthenia gravis foundation there. The head of that is involved in cutting edge research for MG.
Thank you for your response to me. As one of nine children born into a farm family during the 40's, I was taught that doctors were the next thing to God. Although reluctantly at first, I have grown to trust the Internet and use its information to challenge doctors as much as follow the advice of doctors. In fact, and I often laugh at this, I have had two doctors who excused themselves from the room to print information from the Internet and bring it in for me read!! In one case, it was exactly the same as the information I read/printed from my own Internet review prior to our visit!! And this was the extent of her consultation with me!! While I am pleased to know that your experience is different, I simply can not and will not trust the doctors in my area who claim they know how to diagnose or treat MG patients. They simply DO NOT!! This is obvious by the fact that numerous people have died as a result of this disease.
I don't disagree with you. I think MG is one of those diseases that has to be largely self-managed. I have a great neurologist who managed the neuromuscular department of a major university hospital and had dozens of MG patients. But such doctors are rare and hard to find. I depend on him for information and best-practices on medications and treatments. But realistically, I see him every three months. Meanwhile, my symptoms come and go daily, and they are up to me to deal with. I think someone who has been living with MG for several years and has worked to educate him or herself from the good sites on the internet is likely to be as knowledgeable on MG as any average doctor... and maybe more.
I've never met a doctor I didn't trust more than the internet, but you raise an excellent question. How DO YOU know if you are getting the best care... or even good care? Four surgeries seem to me to be over the top, and I'm so sorry you went through all that. I guess my answer is found here on this web site and others like it. For people with MG, their best resource is other people with MG. Hearing others talk about their various treatments, the drugs they are given and the results they get, provides a way to measure your own treatment. Not every doctor is a miracle worker, and sometimes it pays to shop around. I'm currently on my third neurologist, and he's wonderful. I'm glad I was not satisfied with the first two.
