A Year and Three Months of Unexplained Neurological and Systemic Issues
Hello everyone, I find myself in desperate need of advice or shared stories. Since early April 2024, I have faced a swift escalation of peculiar and life-altering symptoms, and unfortunately, I am still awaiting a clear diagnosis. Despite numerous consultations with healthcare professionals and undergoing various tests, the findings remain inconclusive. Currently, the neurologist appointment wait time in my region stretches to about 4 to 5 years. Here’s a summary of what I’ve been experiencing: **Neurological Symptoms:** - A pervasive numbness and tingling sensation coursing through different areas of my body. - Sharp and intense nerve pain that feels both shooting and burning. - Occasional stabbing pain, possibly related to trigeminal or occipital neuralgia. - Experiencing two episodes of full-body electric shock sensations lasting approximately 2 minutes, both followed by feelings of nausea and extreme tiredness. - Visual anomalies such as lines, dark spots, and what I can only describe as "visual snow" or strobing effects. - Increasingly blurred vision combined with difficulties in speech and growing mental fog. - Frequent forgetfulness of ordinary words and related speech challenges. - Episodes of dizziness, difficulties with balance, and persistent tinnitus. - A noticeable reduction in my ability to taste and smell. - Overwhelming fatigue and weakened muscles. **Additional Physical Symptoms:** - Continuous headaches (slightly alleviated since starting Tegretol). - Persistent pain and numbness localized to a specific region on my left thigh. - Low back discomfort. - An itchy, dry scalp with painful areas and flakes. - Acne outbreaks on my forehead and chest, along with unexpected weight gain of about 15 pounds. - Alternating sensations of being extremely cold and then feeling overheated. - A general feeling of disconnection or spaciness. **Testing Conducted So Far:** - MRI scans of the brain and spine show normal results with no signs of MS or tumors. - Clear CT scans of the brain (both with and without contrast). - Blood tests mostly return normal, with a negative ANA result. - Currently prescribed Tegretol, B12, Zoloft, and Depo-Provera. **Context:** I am a 31-year-old woman residing in eastern Canada, and navigating the public health system has proven to be a slow and frustrating process. I am now considering private healthcare options as these symptoms have dramatically affected my quality of life. I feel as though my concerns are not being taken seriously, and it’s a frightening situation. Has anyone gone through anything similar or could share suggestions for potential next steps? Could this be related to an autoimmune condition? A rare neurological disorder? Is there a functional issue at play? I would greatly appreciate any guidance – I am truly yearning to regain control of my life.
Answers (1)
6/27/2025, 4:31:02 PM
OpenHealth AI
I'm truly sorry to hear about the overwhelming symptoms you’ve been experiencing and the challenges you're facing in receiving a clear diagnosis. While this situation is understandably distressing, it's crucial to focus on specific actionable steps to help you navigate through it effectively.
Main Points:
- Persistent and varied neurological symptoms can be complex.
- Continued monitoring and symptom management are essential.
- Consider consulting specialists or looking into alternative assessments.
Explanation:
Your symptoms are widespread and appear to be impacting many aspects of your life, including your neurological and systemic health. The absence of clear diagnosis despite thorough testing adds to the frustration many feel in similar situations. While autoimmune disorders and rare neurological conditions are possibilities, their diagnosis often requires specialized tests and expert insight, especially considering your medical history and current medication.
Prioritized Next Steps:
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Symptom Tracking: Keep a detailed diary of your symptoms, including their onset, duration, intensity, and any potential triggers. This information can be invaluable for future consultations and helps identify patterns.
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Explore Private Consultation Options: Given the long wait times in your public system, seeking private healthcare might provide quicker access to specialists who can offer insight into your condition. Look for neurologists or rheumatologists with experience in complex neurological issues.
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Research Functional Medicine: Explore practitioners in functional medicine who may look at your health holistically and can help you identify any environmental factors, dietary considerations, or lifestyle changes that could be contributing to your symptoms.
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Manage Symptoms at Home:
- Pain relief: Discuss with your healthcare provider about adjusting your current pain management plan if needed. Various techniques such as physical therapy or mindfulness practices can also help alleviate discomfort.
- Diet and Nutrition: Focus on a balanced diet that includes anti-inflammatory foods (like fatty fish, fruits, vegetables, whole grains) and considering a food diary to see if specific foods worsen your symptoms.
- Stay Active: Gentle, low-impact exercises like walking or yoga can support physical and mental wellness without overexerting yourself.
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Mental Health Support: Connect with a counselor or support group. Managing ongoing health concerns can take a toll on mental health, and having someone to talk to can alleviate feelings of isolation.
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Explore Possible Referrals: If there are other specialists nearby who might understand your symptoms better (like allergists or environmental medicine specialists), consider seeking referrals from your general practitioner.
In this challenging time, it's vital to stay hopeful and proactive about your health journey. Reaching out for support from others who understand your situation can also provide strength and encouragement. You deserve comprehensive care and to be heard. Let me know if you have any further questions or need additional resources.
Related Questions
7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options
# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - **Portocaval shunt size: 9.9 mm** (blood bypassing the liver into the inferior vena cava) - **Arteriovenous shunt size: 4.4 mm** - **Portal vein size: 6.1 mm** (patent) - **Three nodular cystic lesions** located in the perivascular area, with largest measuring 11.6×20.7 mm, enhancing during the venous phase - Liver features a heterogeneous architecture, exhibiting irregular enhancement - Gallbladder appears elongated and slightly enlarged - Other abdominal organs exhibit normal findings **RADIOLOGIST’S ASSESSMENT:** "Congenital portosystemic shunt indicative of Abernethy malformation; less likely arteriovenous malformation (AVM); cannot dismiss the possibility of localized liver lesions." **ADVICE:** Seek consultations with an abdominal and vascular surgeon. ### Blood Tests (August 1, 2025): **Complete Blood Count:** - WBC: 10.44 × 10⁹/L (normal range) - **RBC: 2.1 × 10¹²/L** (LOW - indicating severe anemia) - **Hemoglobin: 69 g/L** (CRITICALLY LOW; normal is 117-166) - Platelets: 403 × 10⁹/L (elevated) **Biochemistry Analysis:** - Urea: 1.80 mmol/L (normal) - Creatinine: 33.4 μmol/L (normal) - **ALT: >1000 IU/mL** (EXTREMELY HIGH - severe liver dysfunction) --- ## FOLLOW-UP IMAGING (December 16, 2025 - 5.5 Months Old) ### Liver Ultrasound: **RESULTS:** - Right lobe: 64 mm, left lobe: 43 mm - Liver capsule appears irregular and vague - **Parenchyma: heterogeneous, showing 7 hypo-isoechoic nodules** (sizes range from 11.5×10.7 mm to 17.6×15.4 mm) - Capsule features uneven contours - Blood flow noted during Doppler examination - No dilation in intrahepatic bile ducts - **Portal vein: 3.9 mm** (decreased from 6.1 mm - indicating improvement) - Common bile duct: 1.4 mm - Gallbladder: measures 43.7×9.2 mm (pear-shaped, wall thickness 2.0 mm, homogeneous, free of stones) **ULTRASOUND ASSESSMENT:** "Presence of liver volumetric formations (specifically liver hemangiomas)." --- ## LATEST MSCT (February 6, 2026 - 7 Months Old) ### MSCT with 3-Phase Contrast: **FINDINGS:** - Liver remains normal in size, but shows heterogeneous structure with uneven contrast enhancement - **Portocaval shunt: 9.9 mm** (no change, continues to drain directly into the inferior vena cava avoiding liver acinus) - **Arteriovenous shunt: 4.4 mm** (no alteration) - **Three nodular cystic lesions** in perivascular space, maximum size 11.6×20.7 mm, enhancing in the venous phase - **Portal vein: 6.1 mm** (noted during porto-venous phase) - Arteries show no filling abnormalities - Intrahepatic bile ducts remain non-dilated - Gallbladder is elongated and slightly bigger, free from stones - Pancreas: normal - Spleen: measures 66.9×38.5 mm (not enlarged), splenic vein is 3.6 mm - Kidneys: normal placements and structure - No excess fluid detected in the abdominal cavity - No visible changes in lymph nodes **MSCT ANALYSIS:** "Congenital portosystemic shunt indicative of Abernethy malformation, unlikely to be AVM, presence of focal liver lesions cannot be ruled out." **RECOMMENDATION:** Engage with an abdominal and vascular surgeon. --- ## RECENT BLOOD WORK (December 2025 - January 2026) ### Complete Blood Count (January 19, 2026): - WBC: 5.8 × 10⁹/L (SHOWS IMPROVEMENT) - **RBC: 2.93 × 10¹²/L** (IMPROVED but still low) - **Hemoglobin: 72 g/L** (SHOWS IMPROVEMENT but still low) - Platelets: 223 × 10⁹/L (BACK TO NORMAL) - Neutrophils: 30.0% - Lymphocytes: 64.8% - Monocytes: 4.6% ### Biochemistry (January 28, 2026): - Total protein level: 67 g/L (slightly deficient) - Creatinine: 20.7 μmol/L - **Total Bilirubin: 242 μmol/L** (STILL HIGH - unchanged) - **Direct Bilirubin: 142 μmol/L** (VERY HIGH) - **ALT: 50 IU/mL** (DRASTICALLY LOWER from >1000!) --- ## OVERVIEW OF PROGRESS OVER 6 MONTHS | Parameter | August 2025 | January 2026 | Change | |------------------|-------------|---------------|--------------------------| | **Hemoglobin** | 69 g/L | 72 g/L | ↗ Slight improvement | | **RBC** | 2.1 | 2.93 | ↗ Improved | | **ALT** | >1000 | 50 | ✓✓ MAJOR IMPROVEMENT | | **Bilirubin** | 245 | 242 | → Unchanged (still elevated) | | **Portal vein** | 6.1 mm | 3.9 mm (US) | ↗ Decreased | | **Platelets** | 403 | 223 | ↘ Normalized | | **Shunt size** | 9.9 mm | 9.9 mm | → No Change | --- ## CURRENT SITUATION (February 2026 - 7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.
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