I am so sorry you are in this frustrating situation. Sadly, this is very common in lupus and other autoimmune illnesses; many doctors do not realize that the pain and fatigue caused by these illnesses can't be accurately evaluated with lab tests. Plus you have other medical conditions - thyroid and mitral valve prolapse - often other medical conditions can contribute to the problems caused by lupus and other diseases.
Somatoform disorder is a generalized term applied to a group of psychiatric illnessses where physical symptoms predominate. There are very specific criteria for the diagnosis of each specific somatoform disorder, and a doctor should not give such a diagnosis without ruling out all medical causes for the patient's symptoms. Most GPs and family doctors do not have the training and qualifications to accurately make such a diagnosis.
Unfortunately, once such a diagnosis is in your records, you do not have any legal right to have it removed. Patients' rights issues are very complicated because they are controlled by both state and federal laws, including HIPAA, the Health Insurance Portability and Accountability Act, which went into effect in 2003.
Under these state and federal laws, you do not "own" your medical records - they are the property of the health care provider (your doctor, dentist, hospital, etc.). You have the right in most circumstances to inspect your medical records and/or to get a copy of them. Although you do not have the legal right to have information in your medical records removed, you do have the right to put additional information in your records to correct any factual mistakes. This is called the "right to amend". You have this right under both New York state law and federal law. You may have the right in most states to revoke your doctor's right to release your medical records to anyone without your consent.
When you started seeing this doctor, you should have been given a form called a "notice of privacy practices", which explains your doctor's policies regarding the use and release of your medical information, This form is supposed to explain your doctor's procedure' for getting and amending your medical records, and the name of the person to contact in his office. If you do not have this form, call his office and ask for one. They must provide you with this information. This person is usually called the custodian of medical records. Once you have a name and address, send a written request to inspect your medical records. Keep a copy of the letter for your own records and send it registered mail with a return receipt requested, so you have proof of delivery. This letter should also state that you are revoking any prior authorizations or consents for release of your medical infprmation, and that you do not want medical information or records released to anyone without prior written notification to you. Since you do not have any legal right to have the diagnosis removed from your records, restricting the number of people who get access to the information is your next best option.
Be aware that your doctor can charge you for photocopies, so you may want to simply look at your records before getting copies made. The doctor cannot charge a fee for retrieving the records or allowing you to inspect them.
Under New York law, you have the right to challenge information in your medical record that you believe is inaccurate. The right only applies to factual statements. You do not have the right to challenge the doctor's observations or conclusions, so there is no real way to challenge the accuracy of the diagnosis. You may give your doctor a brief written statement about the challenged information. You should include a statement that you are challenging your medical record under New York law. Your doctor must make this statement a permanent part of your medical record. They must release it whenever the information you are challenging is released.
You may also have the right to amend your records under the federal HIPPA law. Your doctor's privacy notice should have this information, or you can get more information about your rights from the Office for Civil Rights, U.S. Department of Health and Human Services (OCR), the federal agency in charge of enforcing the HIPAA Privacy Rule. OCR provides fact sheets for consumers and responses to frequently asked questions on its Website http://www.hhs.gov/ocr/hipaa/.
If you do not find your questions answered there you can call OCR at 1-866-627-7748. This is a toll free number. OCR requests that you read their responses to frequently asked questions before you call this number. You can also get more information by contacting the New York State Department of Health.