OpenHealth Q&A

Reflections on a Complex Journey with Neuropathy

Several months ago, I shared my experience dealing with left-sided facial and body neuropathy that struck me unexpectedly nearly five years ago, coinciding with various chronic health challenges. Presently, I estimate I am about 90% recovered, though the neuropathy remains persistent while I seek clarity on whether test findings point towards a viral or bacterial origin for my condition. For most of this year, I struggled to get back to sleep every morning due to a sudden onset of severe burning pain in my upper body that would last around an hour. While it has lessened, I still encounter similar discomfort upon waking and occasionally during the day. I suspect an autoimmune response might be at play, but I still lack a definitive diagnosis after four long years. I suspect that COVID-19 might have triggered a peculiar autoimmune reaction akin to Guillain-Barré syndrome, leading to widespread nerve and brain damage. I've never undergone a spinal tap, leaving me uncertain if I experienced complications like viral meningitis or encephalitis. The timeline aligns with the early strains of COVID that circulated in 2020, which I attribute to my ongoing symptoms. I tested positive for COVID last October, but it presented as a mild cold without severe complications. If my initial COVID infection is indeed responsible for my long-term neuropathy and related issues, then the strain I encountered last year was markedly different. Am I too late to uncover the roots of my ailments after four years? Will the final conclusion be that I have irreversible nerve and brain damage without clarity on its cause? In late 2020, I noticed a peculiar heaviness atop my head, developing into sensory neuropathy that traveled from my face to my neck and the rest of my body. Initially, it seemed to affect the sides of my body, and I experienced muscle twitches, cognitive lapses, a runny nose with clear, occasionally bloody discharge, ear ringing, dizziness, and even a coughing fit that caused chest pain—an array of vague yet alarming symptoms. I vividly recall an episode in November 2020 characterized by intense burning in my facial area, which left me stumped. That day, I contemplated heading to the emergency room, but the stresses of my mother's cancer diagnosis prevented me from doing so. After enduring these symptoms for about a year, I finally secured an appointment with a general neurologist. Before that, a neurosurgeon had briefly evaluated me regarding potential idiopathic intracranial hypertension after an MRI suggested possible CSF buildup. However, my first neurologist was unhelpful, only seeing me once without suggesting further tests. The second neurologist conducted some evaluations but was disinterested, never providing explanations for my abnormal MRI findings. Disturbingly, I later learned he faced malpractice suits during the time I was under his care, influencing my sense of trust in his expertise. Despite undergoing an EMG/Nerve Conduction Study (NCS) during my visits—with clean results for neuropathy—the persistent symptoms remained. I then saw a third neurologist who was also unhelpful, and I failed to find specialists familiar with chronic autoimmune disorders, leading me to general practitioners more focused on typical headache issues. Ultimately, I sought out a fourth neurologist whose approach differed; he listened to my concerns and communicated effectively. However, due to the elapsed time, he indicated that a spinal tap could have been beneficial earlier, and steroid treatments like prednisone would carry unnecessary risks at this stage. While he again confirmed no nerve damage based on his EMG tests, the neuropathic discomfort in areas such as my face, neck, and genital region remained troubling. This neurologist subsequently took a position at a different institution, leaving me without a specialist to consult. My most recent referral to a new neurologist was rejected, and instead, I was advised to seek out a subspecialist without specific direction on who could help. Such experiences have been disheartening, as I often feel dismissed and unheard in this ongoing journey. Performance evaluations from relevant tests and scans can provide clarity. Roughly a month after the onset of my symptoms, I underwent blood work and had a CT scan of my brain which yielded these notable observations: - No acute intracranial issues or signs of mass effects were found, although there was mild volume loss, especially on the right side. - There were indications of a small area of encephalomalacia, but the imaging raised more questions than answers. Since late 2020, I have had three MRI scans of my brain, with each revealing varying findings. The first MRI disclosed partially empty sella indicating potential idiopathic intracranial hypertension and showed slight CSF prominence. The second MRI reinforced the earlier findings, but also introduced indications associated with chronic microvascular changes. In contrast, the most recent MRI in 2023 failed to report on the previously noted issues, instead only highlighting mild volume loss consistent with encephalomalacia, with no signs of acute complications. Additionally, I underwent CT assessments of my sinuses, culminating in a follow-up this year that indicated mild sinus disease with a designation of no significant nasal deviation or acute changes. Investigations into autoimmune conditions such as lupus and Sjogren's, along with thyroid disease, have all returned negative results. I have tracked various inflammatory markers that have remained elevated despite being attributed to my weight, revealing consistently high levels since testing began in 2022. I've consulted with rheumatologists, but the answers remain elusive. The neuropathy and stiffness on the left side of my neck remain, albeit improved, as does the burning pain, which infrequently resurfaces. Furthermore, my cognitive abilities have improved yet still show some deficits. Over the years, I have also dealt with erectile dysfunction and anorgasmia along with numbness in my genital area, which initially presented as prickling sensations. While these symptoms have shown signs of recovery, sensitivity remains compromised, particularly on the left side. I'm left pondering future avenues of treatment and whether my ongoing sinus inflammation indicates a chronic post-viral aftermath of some former infection. My trusted ENT speculated that sphenoid thickening often results from bacterial infections, though definitive answers remain unconfirmed. Could the presence of sphenoid thickening in 2021 hint at a lingering post-viral issue? At the time of the CT scan, I was already grappling with chronic neuropathy and a myriad of neurological symptoms, prompting the need for a deeper understanding of my situation. If anyone has thoughts or guidance on navigating long-term neurological issues, I would greatly appreciate your insights.

Answers (1)

7/10/2025, 1:31:07 AM

OpenHealth AI

It sounds like you’ve been on a very challenging health journey, dealing with complex and persistent symptoms related to neuropathy and trying to find clarity on their cause. Your concerns about potential autoimmune responses, post-viral effects, and the ongoing search for an accurate diagnosis are completely valid. Let’s break this down into key points and practical steps you can consider.

Summary of Key Points:

1. You have ongoing symptoms of neuropathy with uncertain underlying causes, potentially linked to prior COVID-19 infection or chronic inflammation.
2. Multiple evaluations and testing have yielded mixed results, and you have faced challenges finding appropriate specialists.
3. The presence of sphenoid thickening may suggest chronic inflammation, possibly related to previous infections.

Explanation of Your Concerns:

With many complex and overlapping symptoms, it can be frustrating and disheartening when previous healthcare experiences leave you feeling dismissed or unheard. Neuropathy can be caused by various factors, including autoimmune issues, infections, or even unresolved inflammation. Your inquiry about how the previous COVID-19 infection and potential autoimmune responses may be connected is particularly pertinent, given current understandings of how viral infections can trigger long-lasting immune responses.

Actionable Next Steps:

1. Symptom Tracking: Continue to document your symptoms closely, noting any patterns regarding when they occur, their severity, and any potential triggers (diet, stress, environment). This can provide useful information for healthcare providers.

2. Seek a Specialist in Neuroimmunology: Given the complexity of your situation, a neuroimmunologist may be a better fit for your needs. They specialize in neurological issues that may have immune underpinnings and could be more equipped to analyze your symptoms in relation to autoimmune conditions.

3. Consider a Comprehensive Autoimmune Panel: Although previous tests returned negative, discussing a broader autoimmune workup with a specialist, including tests for conditions like Chronic Fatigue Syndrome or Small Fiber Neuropathy, may be beneficial.

4. Explore Pain Management Options: Engaging with a pain management specialist can be helpful, particularly for the burning pain affecting your upper body. They can provide non-invasive techniques, such as physical therapy or certain medications, aimed at alleviating nerve pain.

5. Investigate Alternative Therapies: Some patients find benefit in complementary approaches, such as acupuncture, cognitive-behavioral therapy for pain management, or dietary adjustments emphasizing anti-inflammatory foods. Discuss these with your healthcare team to ensure they align with your overall treatment plan.

6. Connecting with Support Groups: Seeking out patient support groups for neuropathy or chronic illness can provide emotional support and actionable insights from those experiencing similar challenges.

7. Continued Dialogue with Healthcare Providers: Advocate for yourself during medical visits. Bring your symptom diary to appointments and express your need for cohesive care. It may be helpful to request referrals or insights from trusted healthcare providers if they cannot assist.

Reassurance:

Remember that although the journey has been long and fraught with unanswered questions, it's not too late to seek new paths for clarity and improvement. With perseverance and the right support, many patients with similar challenges find ways to manage symptoms effectively and regain control over their lives. Your health is worth ongoing exploration and attention. Don’t hesitate to reach out for community support and specialized care.