View Full Version : Stuck and don't know what to do

10-03-2006, 02:46 AM
Hi everyone. I had a BAD day at the doctor's yesterday and I am so upset I feel like giving up on doctors all together. I haven't been diagnosed yet, Rhuematologist appointment coming up on the 31st, and went to my family doctor yesterday to update my thyroid results and get results from an echocardiogram. This was the first time I had seen this doctor, I have going to his medical practice for 6 months but had only seen his nurse practiononer up till yesterday. Well, after talking to me for only 2 or 3 minutes, he told me I needed my Synthroid increased and that my echo showed thickening of the heart walls and mitral valve prolapse, then he proceeded to tell me that I had no clinical evidence for all the pain and fatigue I have been feeling for the last 9 years (I also have a positive ANA, Red rashes on my legs and scarring from rashes on my face). And then he said I needed to see a psychiatrist !!! They don't believe me !!!! I was crushed. And angry. Now this is an official diagnosis on my charts, how will I ever get a doctor to take me seriously again once they see my charts?? I had a bad bout of depression in the early 90's and like a fool I included this in my health history and I know that this influenced him to decide that this is all in my head. He talked to my like I was a nutcase, very demeaning, would not listen to me, and he had never met me before.!! I have been battling for 9 years to get a doctor to take my symptoms seriously and to have this doctor come right out and say "somatoform" and "Psychiatrist" made me feel like I have gone thru all of this for nothing. I ended up walking out on him. So now I am back to square one...no family doctor...no prescriptions for my meds, and feeling no hope for ever feeling better.
I just realized how long this is getting to be...I guess I needed to vent. One question I do have is if anyone knows if there is a way to appeal what is on your chart? I don't want his diagnosis and comments to have to follow me for the rest of my life. Thanks for listening. Jackie

10-03-2006, 10:41 AM
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.

10-03-2006, 01:21 PM
Marycain, thank you so very much for all the info. I am definitely going to take your advice and change who has access to my records. Again, thank you...you have brightened my day :D

10-03-2006, 03:39 PM
So you won't feel so alone in this struggle.

Patients with autoimmune disorders have more than illness in common. Many also share stories of a long and frustrating fight with the medical system to find a name for their mixed bag of medical problems.

Virginia Ladd, president and founder of the American Autoimmune Related Disease Association, Inc., and a lupus patient herself for more than 30 years, shares these suggestions with women who suspect they may have an autoimmune disorder.

Believe in Yourself
"It's all in your head" or "you worry about your health too much" are common comments heard by those with undiagnosed autoimmune diseases. Doctors can't find anything wrong. Friends and family may begin to wonder if you really are sick; you may even question it yourself. But when it comes to autoimmune disorders, the patient often knows that something has changed and is wrong long before anyone else, says Ladd. Believing in yourself -- in the part of you that says something is wrong -- is critical. Don't give up until you get an answer.

Know Your Family History
Autoimmune diseases tend to run in families, although they can change in their expression from generation to generation. Your grandmother may have had lupus, your mother Graves' disease, or your sister diabetes. "A big step toward diagnosis is finding someone who thinks it could be an autoimmune disorder," says Ladd. "Knowing about your family history can get doctors looking in that direction."

Keep Track of Your Symptoms
Autoimmune illnesses can be characterized by a puzzling group of symptoms that cross medical specialties. Your dermatologist may be treating your skin rash and your family physician is tending to your fatigue, while a rheumatologist is treating your joint pain -- but none of them is talking to the other. It may be up to you to make sure each doctor is aware of all the pieces. But don't overdo it. Describing every symptom you've ever experienced in your lifetime may make you look like a hypochondriac, says Ladd. Stick to the most recent and most pressing symptoms.

Do Your Own Research
Thanks to the Internet, you now have access to a wide variety of medical information once available only to medical professionals, says Ladd. If your symptoms lead you to suspect you may have an autoimmune disease, do your homework. Being informed about symptoms, tests, and treatments will help you communicate with and understand your doctor. But keep in mind that not everything on the Internet is accurate. Be sure to check the source. Is it reliable? Was the content medically reviewed? Is the information reported elsewhere? If you can't verify the information through another source, question it.

Seek Other Opinions
Autoimmune patients see an average of six doctors before ever getting a diagnosis, says Ladd. If you suspect your illness is more than the flu, stress, or fatigue, keep looking even if you don't get answers right away. If your doctor doesn't seem to understand what is causing your symptoms or minimizes them, don't be afraid to find a new doctor. If you can't change doctors because of your health plan, be proactive and ask for referrals to specialists.

Talk to People About Your Symptoms
Although you may feel like others are tired of hearing about your illness, many times talking to friends, family, and acquaintances leads to a breakthrough because someone will know someone else who had the same illness. For instance, a man was talking to Ladd's son about a mysterious liver condition he had been experiencing for years. Ladd's son asked if he had considered the possibility of autoimmune hepatitis. He hadn't. With that clue, the man went back to his doctor and was finally diagnosed.

Don't Become a Victim
When you're feeling lousy and nobody knows why, it's easy to start feeling like a victim. Fight the urge, says Ladd. Others can help, but you have to take the lead. Don't give in or give up. You are your own best advocate.


Related Information

Chronic Fatigue Sydndrome & Fibromyalgia at About.com


10-05-2006, 12:30 PM
Ohhhh. this made me ENRAGED! :mad: There are many wonderful doctors out there, but some of them have the GOD complex. Lupus isn't easy to dx, and also not easy to treat, as the symptoms are so varied and change so much. But doctors MUST be compassionate. And there are many compassionate ones out there. Its just hard to find the right one.
My darling Dr. Blum, who's been treating me for 11 years now, is wonderful. He's a GP, but his mother had lupus, so he understands so much, and has sent me to wonderful specialists whenever it's been called for. But my hubby and I had to live in Florida for a year awhile back. I had SO much trouble finding a doctor who didn't lecture me, or look at me like I was crazy. (ONE doctor looked at my prednisone dosage and tried to say that I was "drug-seeking"...Boy did I ever give HIM a flaming! I mean, if I was drug seeking, it wouldnt be for PREDNISONE!)
Don't give up. If you post what area you're in, maybe someone on here can Private Message you some good docs in your area. I'm in Houston, here, and I'll do that for anyone in my area who needs a good physician.
And DO whtever you can in protecting your patient's rights.
Hugs to you. And a big KICK inthe head (or any other *sensitive* region) to that awful doctor.

10-06-2006, 02:39 AM
Hello again :D After that Dr's appt. I was so upset that I needed to take a few days to cool down before making any decisions. Thank you so much for the advice and support. I have decided that I am going to go see this doctor one more time with my head held high. While I'm there I am going to resitrict access anyone has to my records, I am going to calmly tell the doctor exactly what I think of his diagnosis and of his methods, and I am going to give him a letter written by me stating exactly WHY I disagree with his diagnosis and have that letter added to my files. Thinking back on that day I am glad I walked out when I did...if I had said any more at that point being so upset I would have only confirmed their suspiscion that I am a headcase !!! LOL :wink: THEN the hard part starts...AGAIN...looking for another doctor. I am in a rural area....close enough to big cities for specialists but for a general practitioner the choices are few, and it's hard to find Prime Rib in a sea of ground chuck :lol:
This site has been a bright spot in my day...I read all new posts and learn so much. You have so many WONDERFUL people here. Jackie