I am always amazed and greatly concerned when people tell me they or a relative have been given a life-threatening diagnosis and yet they don't seek a second opinion. I realize that one of the reasons is money if, for example, they are in an HMO and don't think the HMO will pay for an outside opinion. Yet these same people may pay large sums of money for vacations or other things. Unless the diagnosis has been made by a recognized national or international expert, then a second opinion is a must as far as I am concerned. Even experts make mistakes, it is true, but if a local physician has made the diagnosis of a terminal disease, then a second opnion by a recognized expert is a MUST. This is particularly true in neuromuscular disorders of children. Few neurologists have training in these disorders and are not trained to read muscle biopsies. Studies have shown that there is misdiagnosis in about fifty percent of these disorders, even in adults.
If an appoinment for second opinion is made, it is imperative that the specialist have all the medical records from the previous doctors. The best way to obtain these is to hand carry a letter to the different doctors' offices. Telephone calls can be made to X-ray departments, MRI offices etc. saying you want a copy of your films and will be by to pick them up. If you get any hassle from a receptionist, ask for the manager or the head physician. The records may cost to have them copied, but by law you are entitled to a copy of all your records. X-rays and MRI's can be send by e-mail to the specialist's office. However, I would always check at least two weeks before your appointment to be sure the records have been received.
If you are in an HMO and are aggressive about getting the HMO to pay for an outside opinion, it is possible, but may take a lot of effort. The parent of one of my patients had no luck getting the HMO to pay for a work-up by a specialist, so she and her friends formed a protest line in front of the HMO office and her daughter's espensive work-up by a specialist in a university medical center was paid for in full. A new treatment was started that had not be previously suggested, so it paid off royally.