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:
-
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.
-
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.
-
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.
-
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.
-
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.
-
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
Understanding EEG Results for My 22-Month-Old Son: Insights Needed
Could someone help clarify this for me? My son, who is just 22 months old, hasn’t started walking yet, becomes tired easily, and has been experiencing behavioral outbursts. He had a febrile seizure in February 2025, followed by another unexplained seizure in April 2025, which led us to consult a neurologist. Since he was 3 months old, he has been receiving therapy from a physical therapist for torticollis. At birth, he spent five days in the NICU due to issues with meconium aspiration. A recent MRI showed normal results, and he also had a follow-up EEG after one conducted in July 2025. The results from this recent EEG were abnormal for a pediatric patient in awake, drowsy, and sleeping states. Notably, there were brief episodes of left frontotemporal delta slowing, which occurred mainly when he was awake and drowsy. There were no signs of epileptiform activity detected. In contrast, the EEG performed back on July 3, 2025, was deemed normal for both awake and drowsy states, again with no evidence of epileptiform irregularities, although it did not capture any sleep data. This examination was prompted by the child's existing history of febrile seizures. Importantly, he is not currently on any anti-seizure medications. The EEG procedure used standard electrode placements per the 10-20 system, conducted a single-lead EKG, and included continuous video monitoring. During the analysis, the background activity was symmetric, indicating some anterior-posterior (AP) organization, with a dominant rhythm of 50-80 microvolts at 7 Hz. His drowsy state was marked by a reduced amount of eye blink activity, less breathing motion interference, and a generalized slowing in theta/delta frequencies. Stage II sleep exhibited spindles and vertex waves patterns. Additionally, there were intermittent bursts of 250-300 microvolts in the left frontotemporal region with semi-rhythmic activity of 2-4 Hz, mostly observed during wakefulness and drowsiness. No definitive epileptiform discharge was noted. Photic stimulation during the test did not elicit a strong response, and hyperventilation was not conducted during this session.
Understanding Atrial Fibrillation and Thyroid Issues: Variability in Cardioversion Decisions
Hello everyone, I’m reaching out for guidance regarding my mother’s current health situation, and I’d greatly appreciate any shared experiences or thoughts. **My mother's background:** - **Age**: 55 years - **Weight**: Recently dropped to 116 kg from 118 kg in just two days, likely due to diuretics. - **Health history**: Previously an underactive thyroid, undiagnosed and untreated, now presenting as overactive. - **Medications**: Currently taking thyroid medication and a beta-blocker (Rapiblock). **Current health status:** My mother has been hospitalized since Tuesday, experiencing **atrial fibrillation with heart rates exceeding 200** beats per minute due to her thyroid's hyperactivity. - The plan for cardioversion was initially settled on Tuesday. However, the following day, the medical team advised postponing it until her thyroid levels could be stabilized, believing that her heart rate would return to normal once her thyroid condition was managed. - Her **obesity** precludes her from undergoing a transthoracic echocardiogram, and due to her thyroid concerns, she cannot handle contrast dye (this has been a consistent issue for over four years). Therefore, the only feasible option was a **transesophageal echocardiogram (TEE)**, which has yet to be performed. - She has been prescribed various medications including beta-blockers and thyroid treatments in the past. - On Friday, a doctor proposed proceeding with cardioversion; however, the attending senior physician objected. - Today (Saturday), another clinician has expressed a desire to move forward with cardioversion, having initiated a new medication, as the senior physician is unavailable. - **Communication has been unclear**, as we were notified of developments by a nurse rather than the physician in charge, causing confusion and anxiety. - Currently, only a **chest X-ray** is scheduled, and the TEE remains unaddressed. **My inquiries are as follows:** 1. Is it common for medical professionals to have varying opinions and frequently revise medication or treatment plans like cardioversion? 2. Is it safe to conduct cardioversion in the absence of a TEE? I presumed that this was a standard procedure to exclude the presence of blood clots. 3. Is it usual practice to have only a chest X-ray prior to moving ahead with cardioversion? 4. How typical is it for patients or their families to not be directly informed about treatment changes and learn about them through nursing staff instead? I recognize that this cannot substitute for professional medical advice. I’m simply trying to discern whether these circumstances are typical or if we should express our concerns more assertively with the healthcare facility. Thank you for your insights!
28-Year-Old Male Experiencing Scalp Sensations Post-Amitriptyline Treatment
I am a 28-year-old man in generally good health, without any cardiac concerns. Approximately a month ago, I encountered intense pain localized to one side of my head, which was unresponsive to paracetamol. However, a single dose of a migraine treatment provided substantial relief. Following that, I began a regimen of amitriptyline, starting at a nightly dose of 10 to 25 mg. While my head pain has diminished significantly—by about 90 to 95%—I now experience occasional uncomfortable sensations on my scalp. These feelings include pins and needles, a cooling sensation, and some crawling feelings near my hairline and ears. There are fleeting moments where I feel brief throbs lasting a second, but I do not have any persistent headaches. To clarify, I do not experience any of the following: - Nausea - Weakness in my limbs - Numbness - Changes in my vision - Coordination difficulties - Seizures The symptoms I have are transient, shifting around and often intensifying when I become conscious of them or as the day progresses. I would like to know: Is it common to experience these sensations during the recovery stage following episodes of neuralgia or migraine-like discomfort? Additionally, could the amitriptyline potentially be causing these temporary paresthetic sensations? I am seeking some reassurance or advice on what is typically observed during this healing process. Thank you.
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.
Battling Chronic Nausea and Vomiting for Over Two Years
For the past two years, I (age 26, female) have been enduring an incredibly challenging health situation. I experience intense nausea daily and find myself vomiting numerous times, with almost nothing providing relief. To provide some background, I’m from West Texas and I currently weigh around 190 pounds, standing at 5’7”. Initially, my weight was about 211 pounds when these symptoms began, and it fluctuates frequently between 190 and 225 pounds. I engage in vaping and consume THC. Previously diagnosed with hypothyroidism, my condition seemingly resolved, according to my healthcare providers. Additionally, I have polycystic ovarian syndrome (PCOS). I have consistently faced irregular bowel movements, with stools that are loose and sometimes appear to have mucus. Compounding my struggles, I've also suffered from migraines. I have had an IUD for over five years, experiencing two insertions of the Kyleena device. In December 2022, my battle with health took a severe turn when I was diagnosed with stage 4 Hodgkin’s Lymphoma, requiring chemotherapy treatment, specifically AVBD (Apologies for not recalling the exact medication names). By July 2023, I had fortunately achieved remission. However, after reaching remission, my vomiting worsened, transforming from primarily white foam to a mixture of 80% bile, any food I attempt to consume, and still white foam. This intense vomiting, accompanied by significant pain in my upper back, escalated to more than eight episodes daily by November 2023. At that time, THC seemed to be the only avenue for me to retain any food. During this tumultuous period, I consulted various doctors who, after confirming I wasn’t pregnant, attributed my symptoms to Cannabinoid Hyperemesis Syndrome (CHS). Immediately, I ceased THC consumption for over six months, yet the vomiting continued unabated. Each time, doctors would prescribe ondansetron, regardless of my claims that it provided no relief. I experimented with various diets recommended by medical professionals, but there were no improvements in my condition. Eventually, I obtained a referral to a gastroenterologist who intended to perform an endoscopy. However, the procedure was prohibitively expensive even with insurance, and thus was never conducted. This doctor also ordered blood tests to rule out several gastrointestinal disorders, such as Crohn's disease, Irritable Bowel Syndrome (IBS), and gluten sensitivity, but all results came back normal. Afterward, I had another appointment with a different gastroenterologist, but the doctor failed to meet with me. Instead, a nurse informed me that the doctor had merely recommended promethazine without conducting any tests or scheduling further visits. When I mentioned the possibility of gallbladder issues, the doctor laughed dismissively at my suggestion. Discussing my situation with my oncologist, he suggested that my heightened sensitivity to food odors stemmed from my chemotherapy experiences while I was working in fast food. While food smells indeed affect me, I'm primarily triggered by medical scents such as rubbing alcohol and cleaning agents. This ongoing ordeal has been overwhelmingly distressing. I now experience episodes of vomiting accompanied by bright red blood, presumably due to a throat tear. When I first encountered this troubling symptom, I consulted a doctor who appeared unfazed and prescribed a promethazine suppository, which does help but makes me extremely drowsy. My nausea persists nearly around the clock, often feeling as if there’s a heaviness in the upper part of my abdomen. I frequent urgent care facilities when my symptoms intensify, only to be met with minimal assistance since this is a chronic issue. Currently, I lack a primary care physician. Whenever I sought one, I encountered skepticism regarding my condition, with some healthcare professionals implying that I was exaggerating my symptoms. Though many physicians who do take my situation seriously seem baffled, I've lost count of the diverse medical experts I've consulted about these ongoing issues. If anyone has insight or suggestions, I would genuinely appreciate it. I can share my latest bloodwork results if that would be helpful—just let me know!