"Don't Know How Long I Have": 25-Year-Old With Undiagnosed Neurological Disease

A 25-year-old Reddit user recently shared the worsening condition of their undiagnosed neurological disease, which they say impacts their sleep to the point where they don't think they'll survive much longer. In a post on Reddit's popular forum Ask Me Anything (AMA), user BPD-Recovery shared their journey with the disease, which they've been told is similar to rare Fatal Familial insomnia but different in origin. "I have a neurological disease that prevents me from sleeping," the user titled the post. 

"I'm 25 years old. I have a neuromuscular disorder that affects the way my brain regulates sleep. My disorder is similar in symptoms to the rare Fatal Familial Insomnia, but different in origin. I sleep 8 hours a night without experiencing rest. I have vivid dreams but I have no sensation of sleep," BPD-Recovery wrote. 

Take a look below: 

I have a neurological disease that prevents me from sleeping. AMA
byu/BPD-recovery inAMA

In the post, the user revealed that the sleeplessness started at the age of 4 and the issues all stem from the spine. "There is no name for my condition. I have progressively deteriorated over 2 years. It began with hallucinations, irratibility, extreme mood swings, exhaustion, etc," they shared. 

Further, the user revealed that in the past 4 months, the condition has been affecting their heart. "My nervous system is fucked. I have severe dysautonomia, which means my heart and blood pressure go from super low to super high erratically," they wrote, adding, "I've been in and out of emergency rooms for borderline heart attacks about 7 times in the past 3 months." 

"My quality of life is about 1/10 and based around my symptoms. I have heart and exhaustion symptoms 24/7. I don't know how long I have, but can't see myself making it more than a year," the user concluded. 

The post was shared on Reddit just a few days back. Since then, it has accumulated more than 12,000 upvotes. In the comments section, users suggested new treatment options, from calling specialists to trying new therapies. However, the user said, "I kind of gave up due to extreme despair from years of medical gaslighting/not getting anywhere," but he added, "This thread has motivated me. I called Mayo Clinic and a few places today."