OpenHealth Q&A

Am I Experiencing a Misdiagnosis?

I find myself pondering a significant question about my health. At just three years old, I underwent an evaluation for autism; however, my father was skeptical of that diagnosis and kept advocating for further investigation. This led to various tests, including MRIs, ultimately resulting in a diagnosis of mild spastic cerebral palsy affecting my left side. The diagnosis stemmed from the discovery of a non-cancerous cyst on my spine, which raised concerns primarily about nerve damage rather than any brain injury. Throughout my childhood, I experienced fluctuations in my condition, particularly on my right side, with bouts of severe difficulty that caused me to lose skills I had worked hard to develop. There were stretches, especially between the ages of 15 and 18, when pain severely limited my mobility, culminating in debilitating numbness in my arms, back, and hands, making it nearly impossible to use them. I received an autism diagnosis later on, and my speech did not develop until I was nearly eight, with walking only starting around five. Every few years, I returned for MRIs—whenever I raised concerns, my doctors would check to ensure there were no signs of deterioration or cancer. Consistently, these evaluations indicated spinal issues without any references to cerebral palsy. A year prior, I scheduled an MRI for the first time in six years, particularly after being diagnosed with frontal lobe epilepsy just a month before. I needed reassurance that no additional complications were present. The results were clear: my brain appeared normal, but the MRI revealed multiple lesions on my upper spine. The doctors speculated that this could indicate multiple sclerosis or a related condition, but further testing was hindered because my previous medical practice refused to provide my records, forcing me to threaten legal action before I successfully acquired my MRI results. Now, I'm pushing for additional examinations because my daily symptoms align with a more complex issue than I initially thought. It seems contradictory that cerebral palsy, which typically does not worsen, has led to this unpredictable spectrum of symptoms. Yet, there's a nagging fear that I might be overthinking this situation. I'm apprehensive that mentioning my cerebral palsy will lead doctors to dismiss my other concerns, similar to how my long-standing seizures were trivialized as mere "cerebral palsy shakes." I genuinely wish to start anew in my medical journey to uncover the truth about my health. For some additional context, autoimmune disorders are notably prevalent in my father's family, and my mother struggled with substance abuse during her pregnancy with me. Furthermore, when I was diagnosed with epilepsy, I was tested for POTS and diabetes to eliminate those possibilities. I was identified as having cerebral palsy in 2007, only three years after my birth in 2004.

Answers (1)

9/5/2025, 9:40:43 AM

OpenHealth AI

It’s completely understandable to have concerns about your health, especially given your complex medical history and the various diagnoses you've received over the years. Your symptoms and the challenges you're experiencing are significant, and it's important to ensure that they are thoroughly investigated.

Overview:

You have had multiple diagnoses, including cerebral palsy and epilepsy, alongside ongoing symptoms that seem to point towards a potentially more complex condition. The presence of lesions on your spine raises legitimate questions about other neurological conditions, like multiple sclerosis (MS).

Explanation:

Cerebral palsy is generally a static condition, meaning it doesn't typically worsen over time without new lesions or damage. The fluctuating symptoms and pain you describe, along with the new findings from your MRI, suggest that there may be more factors at play. It’s crucial to pursue a comprehensive evaluation to better understand your situation.

Next Steps:

1. Document Your Symptoms: Keep a detailed record of your symptoms, including their frequency, duration, and triggers. Note any changes in functionality, such as mobility or cognitive abilities. This will help healthcare providers understand your situation better.

2. Seek a Specialist: Aim to consult with a neurologist who has experience with complex cases, particularly those involving lesions and potential MS diagnoses. They can provide a fresh perspective on your symptoms and history.

3. Request Comprehensive Testing: During your appointment, discuss the possibility of further testing, which may include:

   • MRI scans focused on brain lesions.
   • Lumbar puncture (spinal tap) to check for markers associated with MS.
   • Blood tests to rule out autoimmune disorders.

4. Build a Support Network: Surround yourself with trusted family members or friends who can accompany you to medical appointments. They can help advocate for your concerns and ensure your voice is heard.

5. Consider Comprehensive Medical Records: If you haven’t already, request all your medical files from previous healthcare providers to ensure that all relevant information is available for new providers.

6. Stay Informed: Research credible resources on conditions that concern you, like multiple sclerosis. Educating yourself can empower you during discussions with healthcare professionals.

7. Voice Your Concerns: Clearly express any fears or concerns about being dismissed due to previous diagnoses. A good doctor will appreciate your honesty and work with you to address all your symptoms without preconceived biases.

Take a deep breath. Pursuing clarity in your health can be a challenging journey, but your proactive approach is a strong step in the right direction. If you need more guidance or support as you navigate this process, feel free to reach out.