OpenHealth Q&A

Two Months of Illness with No Answers: Seeking Guidance

For the past two months, I've found myself confined to bed, grappling with a plethora of debilitating symptoms. You can delve deeper into my story [here](https://www.reddit.com/r/DiagnoseMe/comments/1m532pw/my_doctor_has_no_idea/); however, I’ll summarize the critical aspects, knowing many of you are busy and may want concise information. (I apologize for the length of this post. It genuinely took me three hours to compose.) **Personal Details:** - Age: 25 - Height: 5'7" - Weight: Initially 110 lbs, which has decreased to 97 lbs since the onset of my symptoms. **My Current Predicament:** - **Main Symptoms:** I experience severe shortness of breath, tightness and pain in my chest and back, dizziness, irregular heartbeats, tingling in my limbs, fluctuating blood pressure, and trouble swallowing. - It’s crucial to underscore just how intense these symptoms are. On particularly bad days, I've found myself in bed, writhing and crying out in pain, which may sound overly dramatic, but I assure you it's not. My mother and sister have been my constant caretakers throughout this ordeal. - **Additional Symptoms:** These vary day by day and can include a sore throat that feels constricted, coughing, chills, stiffness throughout my body, involuntary movements, visual disturbances, sound sensitivity, sleep apnea accompanied by nightmares, and nocturnal panic episodes. - This bizarre series of health issues began on May 23rd without any clear triggering event. Although there are brief moments when symptoms ease, the reasons for these fluctuations remain a mystery. The initial week was particularly brutal, but thankfully, since then, things haven’t deteriorated to that extreme. **Medical History:** - **Diagnoses Include:** Asthma, Gastroesophageal Reflux Disease (GERD), Generalized Anxiety Disorder (GAD), Major Depressive Disorder (MDD), ADHD. - I experienced pneumonia as a child and had severe eczema until age 14. - I've dealt with chronic pain and fatigue starting around age 11. - Orthostatic hypotension has been observed by healthcare providers since I was 14 years old. - My primary care physician (PCP) suspects I may have hypermobile Ehlers-Danlos Syndrome (hEDS) and possibly Postural Orthostatic Tachycardia Syndrome (POTS), though these conditions remain undiagnosed. - My mother and I both have a tendency to develop kidney stones, and every woman in my family, including myself, suffers from extremely painful menstrual periods. - Interestingly, I have never contracted COVID-19 or its variants; we regularly check at home whenever I feel unwell. **Current Medications:** - The only drugs that have provided a modicum of relief include Clonazepam (0.25-0.5 mg) and Baclofen (5 mg), though the effects are short-lived. I limit these to every other day at most. - I also take Pantoprazole (40 mg once daily), Cyproheptadine (4 mg once daily), and Propranolol (20 mg three times daily). **Previous Medication Regimen:** - Initially, I was prescribed naproxen and prazosin but only for a brief period. Omeprazole was my antidepressant for a few weeks before switching to Pantoprazole. I took buspirone for some time, but we discontinued it due to limited benefits and intolerable side effects. - Previously, I used Ritalin and occasionally consumed a small amount of marijuana to aid sleep. Alcohol intake was rare, and I have never smoked cigarettes. - Since May 23rd, I have avoided caffeine, Ritalin, marijuana, and alcohol. One of the early nights of illness, I tried alcohol to see if it would help with sleep, but it was ineffective. - I take B vitamins in a methylated form due to a genetic variant (MTHFR t677t). - I had been taking Baclofen, Ondansetron, and Hydroxyzine as needed for muscle spasms, nausea, and insomnia; however, I have ceased Hydroxyzine usage since it conflicts with Cyproheptadine. **Diagnostic Tests:** - An echocardiogram and Holter monitor conducted on July 22nd showed normal results apart from minor tricuspid valve regurgitation deemed not clinically significant. - During a visit to the ER, both chest X-rays and abdominal CT scans were performed to check for tumors or blood clots. While no significant findings were noted, a sizable kidney stone and two endometrial polyps were discovered. - Two MRIs of the brain indicated minor cysts on the pituitary gland, which do not warrant concern, coupled with some sinus swelling. - An abdominal ultrasound ruled out gallstones but found swollen blood vessels in the pelvic area, marked as "pelvic congestion." - My blood tests have been extensive, making it impossible to summarize all findings here; please inquire if you wish to know specific results, though nothing conclusive has surfaced so far. - Urine tests revealed blood and crystals linked to the kidney stone, yet everything else appeared normal, and urine cultures indicated no infection. **Medical Opinions:** - Most specialists and ER doctors attribute my symptoms to anxiety, considering their widespread nature and resemblance to panic attacks. - Conversely, my psychologist/therapist disagrees, noting the absence of a triggering event, differences in symptom presentation compared to past anxiety, and lack of response to our interventions. - My PCP candidly admits uncertainty regarding the root cause. She posits that anxiety may be intensified by my current condition, but not as the primary factor. We are working under the assumption that my nervous system could be reacting to the kidney stone and giving rise to autonomic dysfunction that may be inciting POTS symptoms. **Additional Information:** - I am scheduled for surgery to address the kidney stone, measuring 2.1 cm, and its removal is essential. There’s hope that this could alleviate some of my symptoms. - I am awaiting results from a saliva test to assess my adrenal hormones. - A pulmonary function test, along with consultations with a gastroenterologist and neurologist, have been arranged, though the waiting periods are lengthy. - Additionally, my PCP recommended a tilt table test, but the cardiologist dismissed it as unlikely to yield useful information. I apologize for the extensive content; I genuinely struggle to condense it further without omitting crucial details. I would deeply appreciate any assistance, insights, or direction on how to proceed. My doubts about the kidney stone being the true source of my issues are echoed by my doctors as well, leaving us at a loss. Your guidance would mean so much to me.

Answers (1)

7/28/2025, 8:01:55 AM

OpenHealth AI

I'm really sorry to hear about the severe and persistent symptoms you've been experiencing. It's understandable to feel overwhelmed and uncertain when facing such a complex health situation. You're not alone, and seeking clarity is a positive step.

Summary of Main Points:

1. You have multiple, debilitating symptoms over two months, including shortness of breath, chest pain, and dizziness.
2. You've undergone extensive tests with some negative results, but also have critical findings like a kidney stone.
3. You're awaiting further testing and treatment while managing significant anxiety about your health.

Explanation:

Your situation involves a range of symptoms that can be related to various underlying conditions, including anxiety, physical health issues, or possibly a combination of both. Conditions such as Postural Orthostatic Tachycardia Syndrome (POTS) can cause autonomic dysfunction and mimic anxiety symptoms. Additionally, the kidney stone may contribute to your discomfort and autonomic response, impacting hydration and overall well-being.

The varying nature of your symptoms, alongside weight loss and other physical signs, highlights the need for a multi-faceted approach to diagnosis and treatment. It’s positive that you're scheduled for surgery regarding the kidney stone, which may provide some relief.

Actionable Next Steps:

1. Focus on Upcoming Appointments:

   • Prepare for your surgery by ensuring you understand the procedure and recovery expectations. Discuss any concerns with your doctor beforehand.
   • Follow up on the results of the adrenal hormone test and pulmonary function test as they may provide insights into your symptoms.

2. Symptom Monitoring:

   • Keep a detailed diary of your daily symptoms to help your healthcare providers evaluate patterns and triggers. Note how symptoms change throughout the day, especially before and after meals, activity levels, and medication use.

3. Hydration and Nutrition:

   • Maintain good hydration, which is crucial, especially if you are managing a kidney stone. Consider drinking electrolytes like sports drinks or oral rehydration solutions if recommended by your doctor.
   • Aim for a balanced diet to prevent further weight loss and support overall health. If you're struggling to eat, consider nutrient-dense smoothies or supplements.

4. Stress Management:

   • Engage in relaxation techniques if you feel anxious. Gentle practices such as deep breathing, yoga, or meditation can be beneficial. Mindfulness might help manage some symptoms and improve your overall well-being.

5. Connect with Support:

   • Since you’re facing this alone, consider seeking out support groups or forums for people with similar health challenges. Sharing may alleviate some emotional burden and provide useful coping strategies.

6. Stay in Touch with Your Healthcare Team:

   • Regularly communicate with your primary care provider about any changes in symptoms, especially related to heart rate and blood pressure. If your symptoms worsen significantly, it’s important to seek medical advice promptly.

Your situation is complex, and it's understandable to feel lost, but you are making progress towards understanding your health better. Make sure to take care of yourself and lean on your family and friends for support during this time. Let me know if you'd like more specific information on any aspect.