Progressive cognitive decline, severe derealization, medication intolerance, dizziness, and unexplained neurological symptoms
I’m a 41-year-old female with a progressive illness that multiple specialists, including Mayo Clinic, have not been able to explain. I’m wondering if anyone has experienced a similar combination of symptoms or eventually received a diagnosis.
I had mild depersonalization/derealization years ago related to anxiety, but it was nothing like this. After my hysterectomy in 2023 (ovaries were left), everything changed. These symptoms have been constant since they started and continue to worsen.
My symptoms include:
Severe depersonalization/derealization
Barely recognizing myself in the mirror
My children, husband, home, and even cities I’ve lived in no longer feel familiar, even though I logically know who they are
Emotional numbness (although I can still cry)
Constant confusion and brain fog
Racing thoughts, intrusive thoughts, and intrusive images
Difficulty thinking clearly, processing information, and carrying on conversations
Short-term memory decline
Frequent jamais vu
Dizziness (often feels like I’m on a boat)
Eye floaters and visual disturbances
Episodes of waking with my heart racing
Frequent urination/urinary urgency
Significant gastrointestinal problems, including eosinophilic gastrointestinal disease
Oral Allergy Syndrome
Unintentional 25-pound weight loss over the past year
One of the strangest parts is that I’ve become extremely sensitive to medications and supplements.
I took Prozac for over 20 years with no problems. Since 2023, SSRIs have caused auditory hallucinations. Even medications like Advil or common supplements can make my dissociation dramatically worse, or I have what seem to be paradoxical reactions where medications do the opposite of what they’re expected to do. Because of this, it’s become incredibly difficult to find anything I can tolerate.
I’ve had an extensive workup, including Mayo Clinic. Brain MRIs show stable white matter lesions. An early EEG showed bihemispheric slowing, although a later prolonged EEG was normal. Neuropsychological testing showed a mild neurocognitive disorder. My lumbar puncture, autoimmune encephalitis antibody testing, sleep study, MCAS testing, and genetics evaluation have not provided an explanation.
My neurologists are confused because my symptoms continue to progress despite extensive testing.
I’m not asking anyone to diagnose me. I’m simply wondering if anyone has experienced a similar combination of neurological, cognitive, visual, autonomic, gastrointestinal, and medication sensitivity symptoms, and if so, what the eventual diagnosis was or what helped.
I honestly feel like I’m slowly losing myself, and I’m hoping someone out there recognizes this pattern.