OpenHealth Q&A

Unraveling a Complicated Neurological Condition

Female, 35 years old Current weight: 130 lbs, a drop from 170 lbs in January without any intentional efforts. Height: 5 feet 8 inches. Medications: Currently taking 600 mg of Lyrica and 6 mg of buprenorphine daily. I have maintained sobriety from heroin and fentanyl for approximately three years. Medical History: In my twenties, I underwent bilateral joint replacements for my temporomandibular joint (TMJ). Additionally, I experienced an unexplained inflammatory arthritis that could not be precisely diagnosed. About two years ago, after experiencing numbness in my right hand and arm, I underwent a CT scan as a precaution following a potential stroke. The results showed some minor white matter lesions, but nothing definitive was noted regarding their clinical significance. Since then, I have been under the care of a neurologist, with whom I have been consulting while awaiting my appointment at OHSU scheduled for next year—this wait has extended since December of the prior year. Recently, a sleep study revealed that I have REM sleep behavior disorder, as my husband observed me talking, sitting up, and occasionally hitting him in my sleep, despite having no memory of such incidents. Last year, I was tested for HIV on five separate occasions, with all tests returning negative results. The final test included a specific analysis, which also yielded a negative outcome. Although I tested positive for Sjögren’s syndrome, my rheumatologist determined the positivity was insufficient to require treatment. A test for anti-nuclear antibodies (AAg) returned negative. Current Symptoms: I experience orthostatic hypotension, causing a significant drop in blood pressure (around 35 points). My resting heart rate has been alarmingly high, fluctuating between 140-160 beats per minute over the past three months; a heart monitor confirmed it was rapid but consistent. I sweat excessively, even during minimal exertion, such as sweeping, and I can unexpectedly perspire while showering. For the past ten months, I have also experienced episodes of diarrhea during the night, leading to sudden awakenings and, at times, fecal incontinence. Weight loss was not intentional; I have been awakened early by diarrhea despite initially weighing 170 lbs in January. I have been diagnosed with urinary retention. While walking, I often need to clench my left fist and swing my arm to maintain balance. Furthermore, a nerve damage diagnosis in my eyes revealed changes resembling glaucoma cupping. I frequently feel a sensation of wetness and cold on the back of my right leg, extending from my buttock to the knee. Constant neck and shoulder pain persists; I have tried physical therapy, but with limited success. Over-the-counter pain relief options like lidocaine or Aspercreme provide some relief, yet discomfort is constant. Occasionally, I slur my speech and have had difficulty grasping items like doorknobs or refrigerator handles. Sometimes, I mix up words, frequently reversing pairs like "sale" and "fire," which I only became aware of after my husband pointed it out about a year ago. One particularly disconcerting symptom is an unexpected wave of despair that strikes me suddenly—leading to feelings of suicidal ideation without any apparent cause. This intense depression can last from just a couple of hours to several weeks, after which I often return to a normal state, with these episodes occurring approximately every two months. During these episodes, I experience panic, chills, excruciating nerve pain, and severe insomnia. Conversely, when I feel normal, I typically sleep about ten hours a night and often need to nap during the day due to overwhelming fatigue. My legs have become increasingly stiff; initially, I noticed this only at night, but it has now developed into a persistent all-day issue that causes pain when walking, although walking sometimes alleviates the discomfort. Recently, I've discovered a troublesome urge to shake my head, which, while irritating, is manageable. The cumulative nature of these issues is becoming overwhelming. During a recent visit to my neurologist, he mentioned contacting OHSU to expedite my appointment due to the progressive nature of my symptoms over the past year; however, I have yet to receive any follow-up. I have undergone extensive testing, so feel free to inquire about any specific tests I didn’t mention. My primary concern right now is whether it is feasible for me to be experiencing multiple system atrophy at my age, or if that diagnosis should be ruled out? My husband and I have noted a marked decline in my condition over just the past five to six weeks, and I am genuinely feeling apprehensive about what lies ahead.

Answers (1)

9/8/2025, 2:31:00 PM

OpenHealth AI

I understand that managing a complex and progressive set of symptoms can be overwhelming and worrisome. Your concerns about the possibility of multiple system atrophy (MSA) and the rapid decline in your condition are valid, especially given your recent symptom changes. Let's break down your situation and provide some actionable guidance.

Key Points:

1. Symptom Overview: You have a range of neurological symptoms that include severe fatigue, orthostatic hypotension, abnormal heart rate, muscle stiffness, cognitive changes, and sudden emotional shifts.
2. Potential Diagnosis: Your concern about MSA at a relatively young age is noteworthy, but it’s essential to consider this alongside your complete medical history and test results.
3. Immediate Steps: Focus on symptom management and advocating for timely follow-up with your neurologist or other specialists.

Explanation:

MSA is a rare neurodegenerative disorder that can lead to severe motor and autonomic dysfunction. While it can present in younger individuals, it is also similar to other conditions like Parkinson’s and might overlap with some of your existing diagnoses. The rapid fluctuation of symptoms you mention is also concerning and should be carefully monitored.

Next Steps:

1. Keep a Symptom Diary: Document daily symptoms, including their severity, duration, and any patterns you notice. This will be helpful for your neurologist during follow-up appointments.

2. Monitor Your Heart Rate and Blood Pressure: Given your high resting heart rate and episodes of orthostatic hypotension, tracking these readings daily can provide valuable insight for your doctor.

3. Engage Your Healthcare Team: Contact your neurologist's office and express urgency regarding your symptoms. Ask for clarification about follow-up timelines with OHSU. You can also consider seeking advice from a second neurologist if waiting times are prolonged.

4. Manage Emotional Wellness: Since you're experiencing intense emotional fluctuations, consider strategies such as:

   • Practicing mindfulness or meditation to help manage feelings of despair.
   • Seeking counseling or therapy to provide support during these challenging episodes.

5. Review Your Medications with a Physician: Given the complexity of your medication regimen, consult with your healthcare provider about potential side effects or interactions that may exacerbate your symptoms.

6. Pain Management Strategies: In addition to over-the-counter options, talk to your doctor about potential prescription options or therapies specifically for nerve pain and muscle stiffness.

7. Physical Activity: While painful, maintaining a gentle exercise routine can sometimes help manage stiffness and improve mobility. Tailor activities to your comfort level, and consider guided exercises that can be safely performed at home.

It's important to not only rely on this guidance but also to communicate closely with your healthcare providers to ensure they understand the urgency of your situation. A timely response from your specialists can help you navigate this complex journey more comfortably. Don’t hesitate to reach out for any further support or information you need.