Misrepresentation of My Health Concerns
23-year-old female from Canada. I am currently facing health concerns that I suspect could be of an autoimmune nature, though I remain open to alternative opinions. My situation involves the presence of TPO, RNP-A, and dsDNA antibodies, alongside a variety of physical symptoms, all of which I have documented with multiple photographs (including rashes, tremors, hair thinning, swelling, and more). Recently, I consulted with a rheumatologist, but his demeanor was noticeably dismissive. He chose not to review my photographs nor listen to my detailed account of symptoms. He didn’t even allow me to complete the forms provided in the waiting area where I was supposed to outline my symptoms and medical history. During the examination, he inquired whether my symptoms had improved since I began taking antidepressants. I replied negatively, clarifying that my issues began occurring long after I started those medications. I perceived that he was leaning towards a diagnosis of fibromyalgia. I voiced my disagreement, explaining that I do not identify with the typical symptoms associated with that condition. He recognized my viewpoint and confirmed that, based on his physical assessment, I did not present signs of fibromyalgia, noting that his patients with this diagnosis typically exhibit a pattern of jumping pain, which I do not experience. My pain is primarily localized to my wrists, finger joints, and knees, and I do not suffer from cognitive impairments. Despite this, he stated he did not suspect fibromyalgia or see any related symptoms, assuring me that he would not annotate this in my medical records. However, when I subsequently visited my primary care physician, I discovered that the rheumatologist had written a letter claiming he believes I have fibromyalgia. He incorrectly reported the findings from my physical exam and misrepresented the symptoms I described. For example, he claimed I said I experience intermittent tremors with physical activity (when in fact, they are constant) and that there was no swelling in my knees or feet (despite me wearing pants and shoes). Additionally, he noted that I experienced pain in the soft tissues of my shoulders and upper arms, while I explicitly stated that there was no discomfort in those areas during his examination. Although I lack solid evidence other than my friend's presence during the appointment, having this incorrect information in my medical records presents an enormous challenge for me. I fear that other healthcare providers will doubt my account, and my doctor has cautioned me that disputing this error could lead to being labeled as a difficult patient on my records. I am at a loss for how to proceed and am in need of guidance. I appreciate anyone who has taken the time to read this!
Answers (1)
3/19/2025, 10:01:02 PM
OpenHealth AI
I'm sorry to hear about the frustrating experience you've had with your healthcare provider. It's understandable to feel overwhelmed and concerned, especially when your health is at stake and you feel misrepresented. Let's address your situation step by step.
Main Points:
- It’s important to ensure your health records accurately reflect your symptoms and concerns.
- You have valid reasons to pursue rectification of the record, considering the discrepancy in documentation.
- Your priority should be to find a supportive doctor who takes your concerns seriously.
Explanation:
From what you've shared, your documented symptoms and the presence of specific antibodies suggest you are dealing with complex health issues that require thorough evaluation. It's crucial for your medical history to be accurately recorded, as this information influences future diagnoses and treatment plans. Misrepresentations in your medical records could complicate your care and may lead to misunderstandings with other healthcare providers.
Next Steps:
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Document Everything: Keep a personal record of your symptoms, their onset, and any relevant photographs you have. Write down the discrepancies you noticed in the rheumatologist's report versus your actual experience.
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Request a Copy of Your Medical Records: Obtain a complete set of your medical records, including the letter from the rheumatologist. This gives you a comprehensive view of what has been documented.
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Contact the Rheumatologist’s Office: Write a clear and concise letter or email to the rheumatologist's office requesting corrections to your medical record. State the specific inaccuracies and provide clarifications based on your actual symptoms and experience. Make sure to mention that you have evidence (like photographs) and a friend's account to support your claims.
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Seek a Second Opinion: Consider consulting another rheumatologist or a healthcare provider who specializes in autoimmune diseases. Look for a doctor who values patient input and takes time to listen to your concerns. It may help to bring your documented evidence to these appointments to provide a clear picture of your situation.
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Consider a Patient Advocate: If you feel overwhelmed by the process, seeking assistance from a patient advocate can be beneficial. They can help communicate your concerns to healthcare providers and ensure your rights as a patient are respected.
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Stay Empowered: Remember that you have the right to seek clarification and correction in your medical records. Your health is important, and persistent advocacy for accurate representation is crucial for your wellbeing.
It's commendable that you are reaching out for guidance during this challenging time. Focus on taking these actionable steps, and don't hesitate to lean on supportive friends or family as you navigate this situation. If you have any further questions, feel free to ask.
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