Summary:
I have an unknown neurological condition. I've been having issues with memory, cognition, fatigue, and headaches. My symptoms are getting worse rapidly, and I am concerned that by the time I have my next appointment with a neurologist, there won't be much left to save.
Please offer any advice you can on receiving treatment before this condition leaves me permanently disabled.
Background & Additional Information:
I am in fairly desperate need of advice. I have an unknown neurological condition, involving a broad constellation of (mainly cognitive) symptoms, that first manifested about 3 years ago and has grown progressively worse since then. I have seen three different neurologists, none of whom have been able to provide a satisfactory diagnosis or any form of treatment. At the moment, the only really useful information we have is a T2-weighted brain MRI from this past February which showed lesions and smaller abnormalities throughout my white matter, including (unusually) in the corpus callosum -- indicating demyelination and potentially some kind of autoimmune disease. The initial hypothesis was multiple sclerosis, but my most recent two neurologists seem rather confident that this is not the case (based on the lack of lesions in my cervical spine MRI, and the diversity of my symptoms).
The time between appointments is usually around 1 to 3 months. My next appointment with my current neurologist is in mid-June. I do not think I will make it that far. I am on the verge of dropping out of college due to my condition, which I can feel eroding my intellect, memory, and personality week after week. None of the providers I have interacted with so far seemed to share my sense of urgency. I have sent increasingly frequent and concerned messages (and made many phone calls to the same effect) to my previous and current neurologist -- all have been fruitless, as far as I can tell.
I am trying my best to balance their approaches and priorities with my own needs; i.e., by employing a more measured tone than I am displaying here, acknowledging the unknown variables present (and risks they consider themselves liable for), and limiting the directness with which I suggest alternative courses of action -- though I'm not sure I've done a very good job. I have comorbid ADHD, depression, and anxiety, which I regret communicating to these providers (I deteriorated for ~two years while they operated under the assumption that my symptoms were psychosomatic).
In recent weeks, the rate of decline has increased drastically. I don't know if I have another two months, much less another two years.
I'm asking for any and all advice that might help me get through this (and ideally with as little permanent damage as possible), but am most critically interested in what I can do to get the help I need from the medical system. I've included an overview of my symptoms below in the hopes that it might guide any suggestions any of you have (like my doctors, I highly doubt that these are all related directly to my medical condition, but I wanted to err on the side of caution and be as thorough as is reasonably possible). For context, I'm a 19-year-old male in the United States. Thank you for your time.
List of neurological symptoms, as of April 2023:
Most symptoms appeared gradually around the same time (mid-2020) and have gradually worsened since then. Many symptoms, particularly the cognitive ones, sharply worsen every month or two, after which some function is gradually regained (i.e., in a pattern similar to what would be seen in vascular dementia, though the currently available evidence does not point to this as a diagnosis).
- generalized, progressive, global cognitive impairment
- loss of attention; other executive dysfunction
- other assorted focal deficits
- loss of spontaneity/creativity/insight
- aphasia (mostly of the expressive variety), anomia
- dissociation, depersonalization, and derealization (beyond what would be explained by psychological issues)
- significant apathy and lack of motivation (again, beyond that which would be typical of depression)
- emotional lability
- insomnia
- transient black spots (scotomas) and flashes (phosphenes) in central vision
- appear in groups and persist for between 30 seconds and an hour (but generally a few minutes)
- frequency is (roughly) between 1 episode/3 days and 10 episodes/day (but occurrences are generally clustered)
- correlate with body temperature and exertion (to a lesser extent)
- illusory palinopsia after visual exposure to repeated patterns, especially text
- paresthesias (mainly numbness and burning in legs)
- occasional dizziness/nausea
- severe and persistent fatigue
- sharp, sudden frontal headaches (relatively uncommon)
- presyncope, blacking of vision, etc. when standing up (much less common now)
- dysautonomia, most notably an inability to regulate body temperature
- ataxia, various gait issues
- problems with coordination, proprioception
- tremor in hands (mainly intention tremor)
- muscle twitches, spasms, and fasciculations (primarily in arms & legs)
- dysarthria, motor-related speech issues
- muscle weakness
- hyperreflexia
- generalized memory deficits; most notable in spatial, episodic, long-term, procedural, and short-term/working memory
- significant difficulty in recall of details, leading to excessive generalization
- Headaches are infrequent, usually sharp and with short duration. Typically followed by general disorientation, malaise, and worsened neurological symptoms (with both central and peripheral manifestation).
- Miscellaneous other information:
- Medications: 20mg Vyvanse, 4mg estradiol, 50mg bicalutamide, 50mcg vitamin D3 (all once daily)
- Other health issues: severe thoracic scoliosis, exercise-induced asthma, mental health issues
- Drug use: I drink alcohol sporadically (but have not the past few weeks)
