Escalating Numbness and Pain: A Journey Through Specialists
Greetings everyone, I am reaching out in hopes of receiving some guidance regarding the neurological and pain challenges I am currently facing. It appears I have been shuffled between various medical specialties without any concrete answers, and my symptoms are intensifying. I cannot shake the fear that there may be a significant underlying issue that is either being overlooked or not taken seriously by my healthcare providers. I experience persistent nerve pain that fluctuates between a mild 3 to an excruciating 10, primarily affecting my right shoulder blade, middle back, arm, hand, and fingertips. This discomfort is often accompanied by sharp, shooting sensations, along with numbness, tingling, and an odd feeling akin to being tickled or touched. Moreover, I have noticed a loss of sensation along the sides of my face—specifically, my temples, cheeks, and jawline. Additionally, I deal with tingling and numbness in my toes and feet, which occasionally extends to parts of my legs. A constant, severe brain fog has become a regular part of my life; I often feel disoriented, as if my perception is blurred and distorted, similar to looking through a fisheye lens. Upon waking, I occasionally experience double vision for a brief period. For several years, I have struggled with discomfort and stiffness in my sacroiliac joints, along with inflammatory bowel issues, persistent bodily fatigue, and general weakness that tends to leave me feeling drained to the point of needing to rest. Extensive blood tests have revealed consistent signs of inflammation and autoimmune concerns. My white blood cell count is elevated, as is my sedimentation rate. I tested positive for ANA and have high histone levels, in addition to low C3/C4 complement levels. I have undergone MRIs of my entire spine, brachial plexus, scapula, neck, and brain. Everything appeared normal save for the brain MRI, which indicated “punctate non-enhancing hyperintensities in the subcortical and deep white matter of both frontal and orbitofrontal lobes.” The physician who ordered the MRI suggested this may be a neurological or rheumatic issue but possibly linked to my occasional headaches, which occur only 2-3 times a month and are alleviated with Tylenol. EMG tests and X-rays have consistently returned normal results. A sleep study was conducted due to my fatigue, revealing that I suffer from sleep apnea, for which I now take Modafinil and use a CPAP machine, though there has been minimal improvement in my brain fog and fatigue levels. Physical therapy has been undertaken for various bodily areas, and I have ruled out thoracic outlet syndrome through ultrasound examinations. I have consulted pain management specialists who prescribed pregabalin, NSAIDs, and muscle relaxants, but none have provided relief. Despite undergoing numerous trigger point injections and nerve blocks, and being scheduled for nerve ablation, I have seen no benefit. Multiple specialists have expressed uncertainty regarding the source of my issues, leading to my ongoing transition between different experts. My symptoms continue to deteriorate month after month. I had a neurology appointment last year, and the neurologist suggested I might fit the criteria for lupus, prompting a referral to my rheumatologist. The rheumatologist confirmed that I meet all the criteria for lupus but posited that my body is simply “inflamed” due to secondary complications with my colitis, which is currently in remission. I feel confused and lost at this juncture. Living with these symptoms is becoming increasingly unbearable, and it seems as though my concerns are not being met with the seriousness they deserve. I have a follow-up appointment with neurology in about six weeks as I navigate this ongoing cycle. I am beginning to feel as though I am either losing my mind or truly facing a significant health crisis. For your reference, I am a 29-year-old white female, otherwise in good health, with no history of diabetes, and my only medical challenges stem from the conditions mentioned above.
Answers (1)
8/1/2025, 2:31:20 PM
OpenHealth AI
I understand that you're feeling overwhelmed by your ongoing and complex symptoms, and it's completely normal to seek clarity and support when facing such a challenging health journey. Here’s a breakdown of your situation and some prioritized steps you can take as you wait for your neurology follow-up.
Summary of Main Points:
- Persistent Symptoms: You have a range of symptoms including nerve pain, numbness, fatigue, and cognitive issues.
- Possible Underlying Issues: There are indications of inflammation and potential autoimmune concerns, possibly linked to lupus.
- Feeling Overwhelmed: It's understandable to feel lost and anxious given the complexity and persistence of your symptoms.
Explanation:
Your symptoms, including nerve pain, numbness, and cognitive difficulties, are distressing and can significantly impact your quality of life. The signs of inflammation and the concerns of autoimmune issues, along with your previous diagnosis of sleep apnea, are important factors that need to be closely monitored. The brain MRI results, although not definitive, suggest some neurological involvement, which requires further investigation.
It sounds like you're doing all the right things in seeking help but feeling a lack of clarity from your healthcare providers, which can contribute to anxiety and frustration. It is essential to advocate for yourself and ensure your concerns are taken seriously.
Next Steps:
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Symptom Tracking: Keep a detailed log of your symptoms, noting when they occur, their intensity, and any triggers. This can provide valuable information to your specialists during your follow-up appointment.
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Prepare for Neurology Appointment: Ahead of your neurology follow-up in six weeks, write down your questions and any changes in your symptoms. Emphasize the worsening of your condition and any new developments, as this information may help your doctor take your concerns more seriously.
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Support Networks: Consider discussing your mental health with a support group or seeking counseling. The emotional toll of chronic health conditions can be significant, and sharing your experiences may offer reassurance and coping strategies.
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Lifestyle Adjustments:
- Maintain a balanced diet rich in anti-inflammatory foods (e.g., fruits, vegetables, fatty fish, nuts) that may help with inflammation.
- Engage in gentle forms of exercise, like stretching or yoga, if feasible. Movement can sometimes help alleviate stiffness and pain.
- Prioritize sleep hygiene by adhering to consistent sleep schedules and using relaxing bedtime rituals to improve sleep quality despite your sleep apnea.
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Stay Informed: Continue to research your symptoms and potential connections to lupus and other autoimmune disorders. Books or reliable health websites can guide you in understanding your symptoms better.
It may feel like a long and frustrating journey, but it's essential to continue advocating for your health and seeking the appropriate answers. A multi-faceted approach that includes both medical and emotional support can be beneficial. You are not alone in this; many people face similar challenges and find paths toward relief and answers. Please feel free to reach out if you need further assistance or support.
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