Hi All, my name is Gep. I am 60 Yr old male and I live in Australia. I have just had 3 weeks in hospital with suspected CLIPPERS. Like most of you, I was relieved to find this Forum after a dearth of info online (and from my Drs). My experience shares some similarities to many that have been described here.
I have been dealing with Depression on and off for most of my life, and for the last few years increasing PTSD, Osteoarthrits, Psoriatic arthritis, a cervical fusion and Hiatus Hernia. A few months back my family became concerned that my executive functioning was slowing... so saw a psychiatrist thinking perhaps ADHD may have been in the mix all along. He sent me for a full brain MRI and there was the Pons lesion. Over a couple of weeks I began to experience the "drunk walk" Ataxia; Nystagmus; Dysarthria; Cognitive Impairment and disabling fatigue. Basicly I felt like my mind and body slowed to a crawl and there was an almost complete disconnect between my conciousness and my body.
When I finaly couldn't get out of bed my wife took me to hospital. After 2 weeks of every scan, puncture and blood test possible, without any obvious issues other than the symptomology and brain lesions my Neuro decided to try Hi dose IV Prednisolone - 1000mgs daily for 5 days. Miracle cure. Sort of... A week later I was home, and now a week after that I am tapering with oral Pred and I geuss I'm running at about 70%. Much better than the acute period, but still need a walking stick, napping every day and mentally fatigue easily.
Thank you Everyone for your generosity and openess sharing your stories here... it certainly helps to know I'm not the only medical "Unicorn"
Phew! Sorry about the novel!
Oh, I just remembered some strange things that happened in the weeks leading up to the hospitalisations - I had several episodes lasting from a few seconds to minutes where 1) my perception of the world went into slow motion - literaly felt like I was watching and listening to a slow motion replay of my surroundings and 2) at other times I also experienced my surroundings like a stop motion movie, where everything seemed to take place in a series of stuttering freeze frames.