OpenHealth Q&A

Three Years of Illness Without Answers

Buckle up, this is going to be a lengthy recount. I'm not sure if sharing my story in this forum will lead to any solutions, but at this stage, it can't worsen my situation. I am a 28-year-old woman. In 2021, I experienced the loss of my mother, which plunged me into what I initially believed to be profound depression. A few months later, after confiding in a relative about my ongoing symptoms, she urged me to get my thyroid checked. My body seemed to be in chaos; I couldn’t maintain my body temperature and went through extreme weight changes, swinging from weight gain to rapid weight loss. I felt like a tightly packed sausage, shinily bloated, and I could barely keep food down—surviving solely on applesauce pouches, strawberry protein shakes, and plain toast. Fatigue enveloped me, a type of exhaustion that was deeper and more consuming than anything I had ever known. I lacked the strength to rise from my bed, struggled to breathe, and my skin, once oily, had become painfully dry—resulting in open sores and persistent night sweats. To add to my misery, I was running a low-grade fever and losing hair—every possible symptom appeared. Upon visiting a doctor, I underwent blood tests, with the consensus being that my thyroid might be the problem given the family history. When the results arrived a week later, the doctor had a peculiar expression and inquired if I had been unwell at the time of the test. I clarified that I was merely suffering from the symptoms that warranted the blood draw. She informed me that my white blood cell count was elevated, prompting her to order additional tests to eliminate any serious conditions. Following these tests, she anxiously held my hand and advised me not to panic, but said I needed to see an oncologist. I set up an appointment, went through more testing, and the oncologist relayed a perplexing finding—my results indicated the presence of MGUS. The diagnosis seemed baffling considering my age, race, and gender, but that was what the tests revealed. He expressed concern since MGUS typically has no symptoms unless it progresses into a form of blood cancer, whose name eluded me. They referred me to a specialist for this type of cancer. Thankfully, after various examinations, they concluded that I did not have this severe illness. While relieved to avoid a cancer diagnosis, I was left without answers, as my troubling symptoms persisted. This prompted a barrage of appointments with various specialists—a rheumatologist, endocrinologist, hematologist, dermatologist, and many more. Now, three years later, I've yet to have a round of blood work that returns normal results. The terms lupus, fibromyalgia, alopecia, and PCOS have all been suggested, but nothing has been confirmed. My condition is deteriorating; I can barely stand long enough to tackle simple tasks like folding laundry without becoming shaky and breathless. My weight continues to yo-yo drastically, hair loss accelerates, and nausea is my constant companion. A low-grade fever is my norm, compounded by night sweats and pain that make restful sleep impossible, leaving me utterly exhausted during the day and unable to perform my best at work. It feels as if I'm trapped in an unending cycle of near-collapse, spending a significant portion of my paycheck monthly on medications that yield no relief. Each time blood work is conducted, the results come back abnormal. My white blood cell count is consistently elevated, and almost every hormone is out of balance. I was advised to take Vitamin D for my hair loss due to a deficiency, only to return a month later with dangerously high levels that nearly sent me into toxicity. Iron levels? Nonexistent. It is an enigma. At this point, I am thoroughly fatigued by the relentless cycle of monthly appointments in pursuit of answers. I seek any possible guidance, as I am desperate. I'm also willing to provide specific levels of my tests if that would assist. I have undergone nearly every conceivable test, and the perplexity continues to haunt me.

Answers (1)

8/31/2025, 11:41:52 PM

OpenHealth AI

I'm truly sorry to hear about the challenges you've been facing with your health, and it's understandable to feel frustrated and exhausted after such a prolonged journey without clear answers. Managing a range of persistent symptoms can be incredibly overwhelming, especially after the significant emotional toll of losing your mother. It’s commendable that you're seeking help, and I'm here to provide some guidance that may help you navigate this situation.

Main Points:

1. Follow-Up on Unresolved Symptoms: It's crucial to continue seeking answers regarding your ongoing symptoms, especially considering the abnormal lab results and the variety of specialists you've consulted.
2. Consider an Integrated Approach: An integrative care plan involving various specialists may provide a more comprehensive understanding of your symptoms.
3. Focus on Symptom Management: While searching for a definitive diagnosis, focusing on managing your symptoms can enhance your overall wellbeing.

Explanation:

You’ve been through numerous tests with abnormal results, which can be frustrating and often leaves patients feeling like they are not being heard or understood. Conditions like lupus, fibromyalgia, and PCOS can have overlapping symptoms, making diagnosis challenging. Additionally, MGUS (Monoclonal Gammopathy of Undetermined Significance) requires monitoring due to the potential for progression, adding to your health complexities.

Your symptoms—such as fatigue, weight fluctuations, hair loss, and recurring fevers—could suggest an autoimmune process, especially given your elevated white blood cell count and hormone imbalances. It's important to keep advocating for your health, and one possible route is to consider a comprehensive review of your medical history and symptoms with a healthcare provider who specializes in chronic conditions or autoimmune disorders.

Next Steps:

1. Symptom Tracker: Create a detailed journal of your symptoms, including their severity, duration, triggers, and any changes after medication or dietary adjustments. This can provide useful insights when discussing your case with healthcare providers.

2. Request a Comprehensive Workup: Given your ongoing symptoms and abnormal lab results, request a comprehensive autoimmune panel and perhaps consider additional evaluations for conditions like adrenal insufficiency or thyroid dysfunction, alongside inflammatory markers.

3. Integrate Care: If you haven’t already, consider seeing a primary care physician who can coordinate between your specialists to ensure a holistic view of your condition. Ask if referral to a multidisciplinary clinic specializing in complex cases could be beneficial for you.

4. Self-Care and Support: While navigating this journey, focus on self-care practices. Try to incorporate gentle activities like yoga or walking, prioritize a balanced diet (consult with a nutritionist if possible), and engage with support groups for chronic illness. Connecting with others who understand your experience can be very helpful emotionally.

5. Consider Mental Health Support: The emotional aspect of chronic illness can be heavy. Therapy or support groups can provide coping strategies and a safe space to express your feelings.

Please take this journey step by step, and remember that you're not alone in this. Let me know if you need clarification on any specific aspect or further information on any conditions mentioned.