Experiencing Symptoms After Sydenham’s Chorea Diagnosis: Should I Request a Brain Scan?
Hi there! I’m a 19-year-old female, standing at 5’2” and weighing 112 pounds, who has been recently diagnosed with Sydenham’s Chorea after dealing with a prolonged strep infection lasting 27 days. Today, I received a penicillin injection to ensure the infection has been fully eradicated; prior to this, I underwent three different courses of antibiotics. Although these medications don't relate to my current diagnosis, I’ll list them: I took amoxicillin twice daily for ten days, followed by Keflex twice daily for the same duration, and then another amoxicillin regimen twice daily combined with clindamycin four times a day for seven days (my throat culture turned negative halfway through this last course, and my doctor advised me to stop). Moving on with my experience: I spent a large part of the day at the hospital undergoing evaluations by neurologists, who described my case as “interesting.” I’m incorporating their terminology for clarity on my condition. • I’m experiencing dystonia in my left hand, with my pinky and ring fingers bending in a claw shape, alongside a downward bend in my middle finger, while my pointer finger is also curling. Interestingly, my right pinky seems to mimic the earlier position of my left hand from Saturday. • My reflexes on the left side are considerably weaker—I’m unable to voluntarily bend my left toes. They can move, but I can't seem to initiate it mentally, which is similar to the current state of my left fingers. When I place them on a surface, they tend to straighten. The neurologist confirmed that this left side exhibited significant weakness. • My voice has drastically changed; it’s now deep and slow, making me sound as if I’m speaking from the back of my throat, which renders me nearly unintelligible to others. I’ve also been stuttering. • I’m dealing with involuntary movements—like snapping my head, clicking my tongue, and baring my teeth—that appear to be constant and relentless. This condition is particularly concerning as it prevented me from undergoing an MRI or CT scan for brain imaging. The medical staff didn't express interest in rescheduling once they noted these tics had to cease. • My memory seems to be suffering as well; I struggle to recall activities from earlier today. I’m only aware that I brushed my teeth because of the clean feeling in my mouth. • For the last few days, I’ve been experiencing a mild fever hovering around 99-100°F. • I think my drawing ability may be affected too. While conducting tests involving spirals and pentagons yielded poor results, an attempt to illustrate one of my characters turned out well, which confuses me. • Additionally, there’s a nagging pain in the center of my back whenever I arch it—though I suspect this may be unrelated. I just wanted to mention all my symptoms. Currently, I’m at home managing treatment with a regimen that includes 60 mg of prednisone for a month, tapering off the next month, 1 mg of risperdal twice a day, and 1000 mg of Keppra twice daily. I’m quite anxious about potential weight gain from this medication mix, but I’m hoping that if I adhere to a low-sedentary caloric intake, I’ll be okay. However, determining my “real” maintenance calories is tricky because risperdal is likely affecting my BMR. It's puzzled me why no sedative was administered to help facilitate a brain scan. The medical team seemed firmly convinced that it was solely chorea affecting me, despite my instincts suggesting that some aspects don’t align. What if there’s additional damage occurring? I’m finding it increasingly challenging to read aloud and even to walk without issues.
Answers (1)
2/6/2026, 9:30:48 AM
OpenHealth AI
Your symptoms and recent diagnosis of Sydenham’s Chorea are understandably concerning, especially with the combination of motor control issues, reflex changes, voice alterations, and cognitive challenges. It's important to address your immediate concerns and clarify whether further brain imaging is appropriate.
Key Points:
- Sydenham's Chorea Symptoms: This condition can cause involuntary movements and other neurological symptoms, which can be distressing.
- Additional Concerns: Given the complexity of your symptoms, especially the changes in reflexes, cognitive function, and persistent fever, it’s worth discussing the possibility of further evaluation.
- Next Steps: Monitor symptoms closely and consider advocating for detailed follow-up medical assessments.
Detailed Explanation:
Sydenham’s Chorea often follows a streptococcal infection and primarily affects motor performances, producing symptoms like the involuntary movements you're experiencing. You're already on a steroid (prednisone) which can help manage inflammation and symptoms related to neuromuscular challenges.
However, the new symptoms you've described, like memory issues and persistent weakness, could warrant further investigation, as they may not be solely attributed to Sydenham's Chorea. It's quite valid to be concerned about what you might describe as atypical presentations.
Actionable Guidance:
- Symptom Tracking: Keep a diary of your symptoms, noting their frequency, severity, and any potential triggers. This can help your healthcare provider understand your condition better.
- Communicate Effectively: During your next medical appointment, clearly express your concerns regarding the persistent involuntary movements, cognitive issues, and fever. Ask if these symptoms could suggest the need for brain imaging or a different type of evaluation.
- Ask Questions: Don't hesitate to ask your doctors specific questions, such as:
- "Given my current symptoms, would a brain scan be advisable?"
- "What other conditions could present with the same symptoms, and how can we rule them out?"
- Manage Anxiety About Medication: For concerns about weight gain from medications, monitor your dietary habits and activity levels. You might consider speaking to a nutritionist who can tailor a plan that takes into account your medication while ensuring you’re receiving adequate nutrition.
- Seek Support: Engage with support groups or counseling services that specialize in chronic illnesses to address the emotional aspects of your experience.
It's essential to continually advocate for your health and seek clarity on your symptoms. Please remember that your concerns are valid, and pursuing a comprehensive evaluation can significantly impact your care and peace of mind.
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