Seeking Guidance for Neurological Concerns at Age 22
Hello everyone, I'm reaching out in hopes of gathering some insights or shared stories from those who might have faced similar challenges. For the past several years, I've been struggling with a myriad of symptoms. Although I have received some diagnoses, a significant portion of what I'm experiencing remains a mystery to me. Here’s an overview of my situation: Five years ago, I began to experience strong, persistent vibrations in my feet, which are especially pronounced when I'm lying down. Fast forward two years, and I noticed that when I reclined on my back, it felt as if my entire body was trembling, accompanied by an almost heartbeat-like pulsation throughout my arms and back. Despite undergoing a spinal MRI that yielded normal results, I was diagnosed with small fiber neuropathy this year. I was informed that this could be linked to my recently identified Sjögren's syndrome, with my initial symptoms surfacing only six months ago. My ANA levels are quite low, which raises questions about the validity of having suffered from this condition for five years. Currently, I am experiencing constant burping, which has become severe enough to result in the development of TMJ symptoms. Additionally, I feel as though I'm not fully able to urinate. There are moments when it seems like my bed is fluctuating up and down, which adds to my unsteadiness. At times, it feels like my brain is vibrating and being compressed—akin to the tremors you might feel when trying to open a tightly sealed bottle or while lifting heavy weights. This peculiar tremor sensation occurs randomly within my brain. Moreover, I experience facial heaviness, reminiscent of having been struck in the nose. Occasionally, I find myself forgetting to breathe or struggling with the simple act of swallowing. My burping has led to some damage to my esophagus, prompting me to seek any potential explanations or ideas from the community. Despite normal MRI results for both my brain and spine, I remain skeptical about the small fiber neuropathy diagnosis because of the intensity of the vibrations in my feet. When I massage my feet, I can feel tightness in specific toes that is quite uncomfortable. From what I've learned, small fiber neuropathy usually presents more as light buzzing sensations, which I began to experience alongside some burning feelings only recently. Additionally, my neck is quite painful, and when I lie down, I face tremors in my chest, often leading to my head bobbing involuntarily. I'm at a loss about my next steps. Any suggestions or guidance would be immensely appreciated!
Answers (1)
7/4/2025, 1:30:59 PM
OpenHealth AI
Thank you for sharing your experience; it sounds incredibly challenging and understandably distressing. While I can't provide a diagnosis or specific treatment plan, I can offer some general guidance and considerations that may help you navigate your situation.
Main Points
You are experiencing a range of neurological and gastrointestinal symptoms, alongside a diagnosis of small fiber neuropathy potentially linked to Sjögren's syndrome. It's essential to prioritize symptom management and seek clarity on your conditions.
Explanation
Your symptoms, including persistent vibrations in your feet, tremors, burping, and facial heaviness, can overlap with conditions such as neuropathy or autoimmune syndromes. Small fiber neuropathy can indeed present in various ways, and it’s not uncommon for symptoms to evolve over time, especially with underlying autoimmune issues like Sjögren's syndrome.
Given the complexity and variety of your symptoms, a holistic approach to managing your health is crucial. Focus on both physical and emotional well-being while also exploring any connections between your symptoms.
Next Steps
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Symptom Tracking: Maintain a detailed diary of your symptoms. Note when they occur, their severity, and any potential triggers, which can help healthcare professionals in understanding your condition better.
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Diet and Digestion: Since you're experiencing severe burping and digestive issues, consider examining your diet. Keep a food diary to identify any dietary triggers (like carbonated beverages, certain foods, or eating habits) that might be exacerbating your burping. Eating smaller, more frequent meals may help ease pressure on your digestive system.
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Hydration and Lifestyle Adjustments: Ensure you are well-hydrated and consider incorporating gentle, regular physical activity (like walking or stretching) tailored to your comfort level. This could help with circulation and reduce some sensations.
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Stress Management: Given the overwhelming nature of your symptoms, finding constructive ways to manage stress may help. Techniques such as mindfulness, meditation, or gentle yoga can assist in reducing anxiety and improving your overall sense of wellbeing.
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Follow-Up: Given the complexity of your symptoms, consider discussing your experience with a specialist in neurology or rheumatology if you haven't already. They can provide insights on potential overlapping conditions or direct you to additional neuromuscular testing if needed.
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Therapeutic Options: For muscle tension or discomfort, approaches like physical therapy or occupational therapy may help improve your symptoms and daily functioning.
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Consider Support Groups: Connecting with others who experience similar challenges could provide emotional support and practical tips based on shared experiences.
You are not alone in this journey, and many others are navigating similar waters. Continue seeking support and clarifying your health conditions, as this proactive approach is vital for your well-being. If you notice any worsening or significant changes in your symptoms, that would be a signal to reevaluate your current management plan. Please take care, and I'm here if you have more questions or need further assistance.
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