OpenHealth Q&A

Living with Unexplained Neurological Symptoms at 23

I am a 23-year-old female, weighing 175 pounds after having lost a significant amount of weight over the past year, dropping from 227 pounds through intermittent fasting. My medical history includes obesity, hidradenitis suppurativa, chronic migraines, and ADHD. Currently, I receive Bimzelx injections for hidradenitis suppurativa and take Fioricet as needed for migraines, alongside Wellbutrin XR for ADHD. I consume alcohol socially but do not engage in recreational drug use or smoking. My health challenges began to surface around August 30th, although I later recognized that symptoms may have started as early as May due to photophobia, which I didn’t initially connect to my current issues. On August 30th, I experienced drooping in my left eye, which I dismissed while continuing to work for the next three days—some colleagues took notice of the drooping as well. Following this, I developed several additional symptoms in the order they appeared: - Intermittent chest pain localized to the upper left quadrant lasting about ten seconds, which began approximately one and a half months ago. - Persistent dizziness accompanied by visual disturbances, including “seeing stars” and dark areas in my vision, along with sensations resembling fainting episodes, also beginning about one and a half months ago. - Blurriness primarily affecting the peripheral vision of my left eye, worsening throughout the day, which I speculate may involve my eyelids. - Episodes of complete blurriness in my left eye on two occasions. - Notable weakness in my arm muscles, making it difficult to raise them overhead, alongside neck muscle weakness by mid-afternoon, which causes my head to feel as if it wants to tilt forward despite holding it back helping momentarily. On September 2nd, I sought care at urgent care but was promptly directed to the emergency room (ER). The triage physician pointed out the ptosis in my left eye and noted that my pupils were not dilating consistently. I was subsequently admitted for evaluation, during which time various tests were conducted. These included two CT scans of my head and neck (with and without contrast), two MRIs of the head and neck (also with and without contrast), and a chest X-ray. All imaging results appeared normal, confirming healthy cardiac and pulmonary function. Multiple blood tests were performed as well, encompassing troponin levels, a comprehensive blood count (CBC), lipid panels, metabolic panels, and thyroid function tests (TSH, T4), in addition to a D-dimer, A1C/blood glucose measurement, and urinalysis. They specifically tested for hospital-acquired infections due to my profession, all of which yielded negative results except for slightly elevated protein levels. After blood thinning treatment, carbon dioxide levels were slightly reduced, and overall health indicators were deemed good. At the point of discharge, my care team suggested a possible diagnosis of myasthenia gravis, ruling out multiple sclerosis via MRI findings. Blood samples for AchR and MuSK antibodies were collected, and I was advised to have an outpatient neurology follow-up. Unfortunately, these initial tests came back negative. During my visit to the neurologist, he did not have the test results yet, forcing him to reorder the same labs. I had them drawn on September 8 and am still waiting for those results as well as follow-up from the neurology department. My neurologist, who employed a meticulous approach to my examination, raised concerns over the absence of a chest MRI or CT scan and questioned why there had been no diagnoses or prescriptions. During my outpatient neurology assessment, the physician observed bulging in my right eye and expressed greater concern regarding that eye than the ptosis in my left. His exam mostly consisted of inquiries about my health and reflex checks, yet he did refer me to see an eye doctor given it had been nearly a year since my last visit. I consulted an optometrist on September 12, who informed me that the scope of her examination was limited by the retail setting. She too noted the bulging in my right eye and the ptosis in my left, echoing the neurologist’s worries about the right eye. Although she couldn’t perform a comprehensive evaluation due to insurance constraints, she did conduct a light reflex test which indicated that my pupils were not functioning correctly; they barely dilated when they should have constricted significantly and did so inconsistently. She suspected my iris was underperforming and performed a check for lymphocytes in my eyes but found nothing alarming. Ultimately, she referred me to a neuro-ophthalmologist for further evaluation. Currently, my symptoms fluctuate throughout the day. I lack a scheduled follow-up with neurology, but I assume they are awaiting the results of the re-ordered AchR and MuSK antibody tests. No further tests have been planned at this stage. I'm left wondering about the accuracy of the imaging results and the likelihood that something might have been overlooked. With my nearly five years of experience as a patient care technician, such oversights are quite rare in my inpatient setting. I am feeling lost and anxious about the next steps in my care.

Answers (1)

9/13/2025, 2:31:01 PM

OpenHealth AI

It sounds like you are navigating a challenging and distressing situation with your neurological symptoms, and it’s completely understandable to feel lost and anxious. Your proactive involvement in your care is commendable, given the complexity of your symptoms and the thorough evaluations you've already undergone. Here’s a structured approach to your situation:

Main Points:

1. Symptoms and Concerns: Persistent neurological symptoms, including ptosis and visual disturbances, require thorough investigation.
2. Current Evaluation Status: You’ve had several necessary tests done; however, follow-up and further evaluation are essential to address your ongoing concerns.
3. Next Steps: Focus on confirming your neurology and eye care appointments, monitoring symptoms, and staying engaged with your healthcare team.

Explanation:

You are experiencing a mix of neurological symptoms that can stem from various underlying conditions. The potential diagnoses mentioned (like myasthenia gravis) warrant detailed scrutiny due to the involvement of your eye and arm muscle weakness. While your imaging tests returned normal, this does not eliminate the possibility of certain neurological conditions, which can sometimes require more specialized tests or repeat assessments.

The concern expressed by your neurologist and optometrist regarding the bulging in your right eye is critical, as it may indicate an underlying issue needing further ophthalmological evaluation.

Next Steps:

1. Follow-Up with Neurology: If you have not already, reach out to your neurologist's office to confirm your next appointment date. Ask if additional tests (like a chest CT/MRI) are being scheduled and emphasize your concerns about symptom management and potential oversight.

2. Neuro-Ophthalmologist Appointment: Ensure that you schedule your consultation with the neuro-ophthalmologist as soon as possible. Prepare a list of your symptoms, particularly focusing on the changes in your eye and vision. Bringing this list can help guide the conversation.

3. Symptom Monitoring: Keep a daily log of your symptoms, noting their severity, duration, and any new developments. This information can be invaluable for your medical team in understanding your condition.

4. Lifestyle Considerations: As you manage your anxiety surrounding your symptoms, consider practices such as mindfulness, gentle physical activity (if possible), and maintaining a balanced diet to support overall health.

5. Communicate Openly: If you are feeling anxious or uncertain during appointments, share those feelings with your healthcare providers. They can provide reassurance, clarify doubts, and help guide your next steps.

Conclusion:

It’s clear you are taking an active role in managing your health, which is important for navigating this complex situation. Make sure to keep your medical appointments, track your symptoms carefully, and engage openly with your healthcare providers about your concerns. You deserve clarity regarding your health situation, and your continued determination will be crucial as you seek answers.