OpenHealth Q&A

Deteriorating Neurological Issues – Seeking Guidance on Reddit

(female, 36 years old, grappling with psoriasis, arthritis, vitiligo, NAFLD, and mental health conditions – these are under control but overall health is reasonably stable) I'm at a loss and unsure of how to move forward; my situation has deteriorated to the extent that I found myself in the emergency room a few days ago. Unfortunately, they couldn’t provide any substantial assistance and merely referred my neurologist to expedite my appointment. As a primary caregiver to my 10-month-old daughter, I struggle to manage her needs without additional support. Lifting even light objects has become a challenge for me, and I'm unable to drive due to overwhelming fatigue and the fear of fainting. I endure persistent pain and frequent episodes of lightheadedness. My doctors seem stumped by my clinical manifestations, leaving me anxious that they might abandon further testing altogether. Here's a brief outline of what I've been experiencing lately: **Symptoms Overview (Onset in 2020, with recent exacerbation):** **Neurological Concerns:** - Persistent muscle weakness in arms and hands (previously sporadic but has become continuous for weeks and exacerbating daily, severely affecting my routine) - Newly emerging weakness in legs (feeling drained, unsure if this relates to compensatory behavior) - Occasional tingling/numb sensations in extremities - Sharp pain radiating from back to arms (initiated recently) - Tingling sensation in mid-to-upper spine (new) - Frequent episodes of limbs “falling asleep” - Increasing lightheadedness (once sporadic but now commonplace, especially when I attempt activities other than resting) - Severe fatigue (recently escalated) - Dropping small items and feeling unsteady (newly observed) Most symptoms were intermittent and mild until the past few weeks, with an exception earlier this year when I visited the ER due to tingling and numbness affecting half my body, which quickly progressed. No additional examinations were conducted at that time, as my vital signs appeared typical and I showed no stroke indicators. **Tests Completed to Date:** - Blood tests (CBC, inflammatory markers, autoimmune profiles, liver enzyme assessments, etc.): results typically normal or with slight deviations - Nerve Conduction Study (NCS) and EMG: results normal - Echocardiogram: normal - Holter Monitor: results pending - Brain MRI (2021): revealed white matter changes associated with migraines and mild neck arthritis; otherwise unremarkable - Cervical MRI (scheduled for 2025): awaiting formal report but will attempt to attach a snapshot in comments or via another platform Currently, I don’t possess any affirmative diagnoses related to my condition. Multiple Sclerosis was initially hypothesized before my first MRI, and I had also considered spinal cord compression from arthritis; however, my physician indicated that the nerve study would have detected such an issue. The emergency room provided no solution (it wasn’t categorized as a trauma case, and aside from an occasionally elevated heart rate, my vitals were stable) and there seems to be some confusion between my family doctor and neurologist regarding my follow-up care. I desperately need assistance. Does my MRI indicate spinal cord compression? Could there still be a possibility of MS that wasn’t evident in the initial MRI? I’ve had my brain MRI scheduled but it seems to be less of a priority compared to my cervical MRI. What steps can I take to address my symptoms while we work towards identifying the underlying cause? What information should I relay to ensure my concerns are taken seriously? I'm struggling to function daily, and I feel uncertain about how to proceed. Thank you for any support or insights you might share.

Answers (1)

3/18/2025, 10:41:08 PM

OpenHealth AI

I'm really sorry to hear about the difficulties you're facing. It sounds like you're dealing with a complex set of neurological symptoms that are significantly impacting your daily life as a caregiver. Your concerns are valid, and navigating this situation can be overwhelming.

Key Points:

1. Symptoms and Concerns: You are experiencing continuous muscle weakness, episodes of lightheadedness, and related neurological symptoms, which have become increasingly concerning and disruptive to your routine.
2. Next Steps: Focus on managing your symptoms, documenting your experiences, and ensuring effective communication with your healthcare providers.

Explanation:

Your symptoms, although distressing, can arise from various underlying causes, and it’s understandable to seek clarity. The lack of a definitive diagnosis can be frustrating, especially with the range of tests you’ve undergone. While your MRI reported mild changes, it did not indicate significant spinal cord compression. However, neurological issues can be complex, and sometimes conditions like Multiple Sclerosis may not be immediately detectable in early imaging or require more specialized testing.

Given your broad spectrum of symptoms, it’s essential to maintain proactive management while awaiting further evaluations.

Actionable Guidance:

1. Symptom Monitoring:

   • Keep a Journal: Document daily symptoms, noting the severity, duration, and any triggers. This historical insight can help your doctors understand changes in your condition and may prove critical for your next appointment.
   • Rate Your Symptoms: Use a 1-10 scale to communicate the severity of your symptoms. This helps convey how debilitating they are.

2. Symptom Management:

   • Rest and Hydration: Prioritize rest and stay well-hydrated, as fatigue can exacerbate many symptoms.
   • Gentle Activity: Engage in mild stretching or physical activities if tolerable. This can help maintain muscle function without overexerting yourself.

3. Communication with Healthcare Providers:

   • Express Your Concerns Clearly: When you see your neurologist, emphasize specific symptoms that are worsening, such as the new leg weakness and increased fatigue. Share your journal to provide a clear picture of the changes.
   • Request Comprehensive Evaluation: Ask about the necessity for follow-up MRI scans of both brain and cervical spine for further clarity, as patterns of symptoms can guide potential diagnoses.

4. Support Systems:

   • Seek Help for Caregiving: If possible, enlist assistance from family or friends to help with your daughter. Reducing your caregiving responsibilities, even temporarily, may alleviate some pressure.
   • Mental Health Check-In: Given your history of mental health conditions, consider reaching out to a mental health professional. They can provide support in managing anxiety and emotional well-being during this challenging time.

Taking these steps can empower you while working towards a diagnosis. It’s crucial to advocate for your health and well-being actively—never hesitate to ask your healthcare providers for clarity and urgency in your care.

Please keep me updated on how things progress or if you need further assistance. You're not alone in this; many resources are available to support you.