What is Neurosarcoidosis?

in #a8 years ago

Wikipedia says:   Neurosarcoidosis (sometimes shortened to neurosarcoid) refers to sarcoidosis, a condition of unknown cause featuring granulomas in various tissues, involving the central nervous system (brain and spinal cord).  It can have many manifestations, but abnormalities of the cranial nerves (a group of twelve nerves supplying the head and neck area) are the most common. It may develop acutely, subacutely, and chronically. Approximately 5-10% of people with sarcoidosis of other organs (e.g. lung) develop central nervous system involvement. Only 1% of people with sarcoidosis will have neurosarcoidosis alone without involvement of any other organs. Diagnosis can be difficult, with no test apart from biopsy achieving a high accuracy rate. Treatment is with immunosuppression.[1] The first case of sarcoidosis involving the nervous system was reported in 1948.[2][3]  

You can read more here: https://en.wikipedia.org/wiki/Neurosarcoidosis#Prognosis

I am not a writer or even a professional blogger however I really wanted to try sharing my part of the human story. I am from Ohio, lived in Germany as a wee child as my dad honored our Nation serving in the US Air Force. Coming back to the states I went K - 12 in the Buckeye State. After graduating HS I went to Hollywood, Ca. It was a great time to be out west. After twenty plus years in CA I came home to recoop from suffering severe head trauma from many auto accidents. (another story for another post) Not knowing my condition life went on. 

Continuing a career in the paper world I lifted a large roll of paper and heard a horrible crack followed by a pain in my lower back that kept me from moving. After a bit of rest i was able to function slow and painfully until quitting time. Well this ended up being a crazy yet typically performed lower back surgery. Years later So much scar tissue and a nerve that was severed, the surgeon never revealed this to me, causes much difficulty. 

So back to the Neurosarcoidosis, I began oddly enough meeting with an incredible doctor, Dr Beegan. After several appointments 2 painful attempts at a lumbar puncture and finally a successful one on the third attempt by Dr Hott who wore knee high boots under her lab coat and was yet another amazingly beautiful doctor on the team of researchers. Finally after not being able to definitively tell the company my exact problem I lost all my benefits. I was finally able to get a grant to the Cleveland Clinic and in 3 separate all day visits and several tests one including the famous biopsy they were ably to assemble all the evaluations and determine that I do indeed have Neurosarcoidosis.

This is me hello, I am Keith Lane and in my best attempts I will tell you my story in both written and other formats. i will be glad to entertain all any questions openly, or as openly as possibly. Thank you for reading my post.