OpenHealth Q&A

Experiencing Unexplained Episodes of Paralysis: Seeking Answers

At 25 years old, I am an African American woman who does not engage in substance use. My health history has never been ideal; I faced significant health challenges throughout childhood, leading to diagnoses of autism, PTSD, fibromyalgia, and depression, alongside a gallbladder removal. However, following a head injury last year, my condition deteriorated dramatically. Now, I experience debilitating pain at a level of 10 out of 10. Although I’ve been treated with Cymbalta, which previously helped control my symptoms, it no longer suffices, and I’ve tried multiple other pain medications with no success. My physical strength is so compromised that I struggle to maintain an upright position. Additionally, my memory – both short and long-term – is declining, my body feels persistently cold and hungry, and I have developed incontinence issues. The most alarming symptom are the episodes of paralysis affecting my lower body; these occur 6 to 10 times a week without warning and can last anywhere from a few minutes to several hours. It’s important to clarify that when I mention "paralysis," I’m referring to a genuine inability to move. Medical personnel have attempted to prompt movement without success, and during these episodes, there is no sensation in my lower body. Notably, I lose the ability to urinate or defecate at those times, although I remain conscious and aware. Despite undergoing numerous MRIs of my brain and spine, all results have returned normal. Blood tests show variable results; typically, my platelet count is slightly elevated, leukocytes may also be elevated occasionally, and my CRP level is around 50. I experience bouts of anemia that seem unrelated to my paralysis episodes. While my doctors label these results as "normal," my records indicate some abnormalities, which I find confusing. Being obese, I anticipate some irregularities, yet my CRP doubling in a year strikes me as concerning. My healthcare providers seem to believe that making lifestyle adjustments will resolve these issues. I’ve adhered to their recommendations, but unfortunately, my condition has only worsened. I've transitioned from using a cane to relying on a walker, and I suspect that soon I may require a wheelchair. I’m reaching out to see if anyone has advice so I can take a proactive approach towards my health. Additionally, I’ve been experiencing some peculiar occurrences: - During a pain management program, my diet was restricted to 1200 calories with four hours of exercise each day, yet I inexplicably gained 15 pounds in one week. I did not indulge in hidden snacks, and my medical team was aware of my food intake. The diet included more carbohydrates, primarily from fruits and vegetables. It seemed healthier, so the weight gain remains perplexing, as it happened again during a similar dietary restriction for a medical evaluation. - Aside from these incidents, my weight remains fairly stable regardless of my food consumption. A significant weight increase occurred eight years ago, where I suddenly gained over 100 pounds in less than a year. My growth patterns have always exhibited sudden jumps, and during childhood, I was consistently in the 99.99th percentile for weight, starting from birth. My TSH levels vary, yet they fall within what I've been told is a normal range (1-4.5). - I also perceive a constant visual distortion akin to TV static, even with my eyes closed, and my color vision appears to be deteriorating. Specialists have flagged this as "potential color blindness" pending further evaluation. - Moreover, frequent fainting spells add to my concerns, and my medical team doesn’t seem particularly alarmed by these episodes. - Interestingly, my younger brother (20) has begun experiencing similar, albeit milder symptoms, including fatigue, memory lapses, and brain “zaps.” He also has been diagnosed with PTSD and fibromyalgia but continues to function normally. Unfortunately, I lack comprehensive health data about my family, as older relatives are reluctant to discuss their medical histories. I do recall my mother being bedridden for lengthy periods, but I cannot discern if this was due to a physical ailment or related to her narcissistic personality disorder. If anyone has insights or suggestions, I’d greatly appreciate it. Thank you!

Answers (1)

6/16/2025, 3:50:48 PM

OpenHealth AI

I'm truly sorry to hear about the range of symptoms you're experiencing. It sounds very overwhelming, and it's understandable you want clarity and effective ways to address your health concerns. Let’s break down your situation and discuss possible next steps.

Summary of Key Points:

1. You are experiencing episodes of lower body paralysis, severe pain, cognitive challenges, unexplained weight fluctuations, and other distressing symptoms.
2. While extensive testing has returned “normal” results, your symptoms not only persist but seem to be worsening.
3. You mentioned the potential for a hereditary component given your brother's similar symptoms and your mother's history.

Explanation:

From what you’ve described, it seems that you’re encountering a complex set of symptoms that may overlap with multiple conditions, including pain syndromes and possible neurological issues. The episodes of paralysis, cognitive challenges, and the distress you have with unexplained weight changes could suggest a need for further evaluation that goes beyond standard tests if they are not capturing the full picture of what's happening in your body.

Given that previous medical evaluations yielded conflicting interpretations, it’s important to consider the following:

• Multiples Conditions: Your symptoms may arise from more than one issue, especially since you have a history of fibromyalgia, PTSD, and now a potential neurological component following the head injury.
• Need for Specialists: Additional consultations with specialists, such as a neurologist (for the paralysis and cognitive symptoms) and potentially an endocrinologist (for metabolic or hormonal evaluations), could yield insights. You might also consider a pain management specialist who can provide alternative therapies.

Next Steps:

1. Keep a Detailed Symptom Diary: Document every episode of paralysis, pain levels, cognitive challenges, weight changes, and any other symptoms. Record when they occur, their duration, and any possible triggers. This information is invaluable for healthcare providers.

2. Seek a Neurology Consultation: Push for a comprehensive evaluation of your neurological health, including possible tests like an electromyography (EMG) or nerve conduction studies that might reveal issues not visible on MRIs.

3. Consider a Metabolic Panel: Ask for a complete metabolic panel and possible hormone tests to evaluate for conditions such as thyroid disorders or other metabolic abnormalities, especially given your history of fluctuating TSH levels.

4. Request a Comprehensive Pain Management Assessment: Given your significant pain levels, consider discussing new pain management techniques, including non-pharmaceutical options like physical therapy, acupuncture, or cognitive behavioral therapy.

5. Connect with a Genetic Counselor: Given your family's medical history and your brother’s emerging symptoms, a genetic counselor can provide insights into hereditary conditions and assist in any needed genetic testing.

6. Self-Care Measures: Focus on maintaining a balanced diet that supports your energy needs while managing your symptoms. Gentle exercises, when possible, may help with mobility and pain levels. Mindfulness or relaxation techniques may also assist in managing stress and chronic pain.

Final Thoughts:

Your experience is significant, and the challenges you’re facing are valid concerns that deserve comprehensive attention. It’s essential to advocate for yourself in your healthcare journey, especially when symptoms are persistent and intervene with daily functioning. Please take care and continue seeking the support and answers that you need. If you have any further questions or need more specific guidance, feel free to ask.