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I joined this forum in hopes I could connect with others for hope. Short story, at age 20 started getting periods where my brain could not focus scattered, out of it. Loss of sensations to external world. Made Engineering school very hard sometimes. 1985 age 23 out of school working now things got worse fast.
Full brain shut down. Desperate I saw physiatrists. Many drug experiments hospitals pushed my decline to super depths. Drugs made it impossible to function. Thoughts of ending it were big.
24 Years old stopped all the drug experiments crawled back to work. 1-2 Years later improved 25%, enough to function. Still confusion with all sensations. Brain was bombarded with this disease all the time. Felt like some rare metabolite, vascular and autoimmune condition rolled up into one disease. All senses shaky scattered, focusing a huge effort. Numb brain function, little sensation entered my brain. Some fluctuations but the condition always there.
Still for 23 years I worked as a mechanical engineer. Started a computer animation
company traveled hiked got married had two girls. Fed up I just wanted to see the world as my family did. Then told my problem to Neurologists and many other doctors. All of them brushed me aside, or were stumped or pushes drugs on me. All drugs magnified my problems exponentially!
2008 Things got real bad a repeat of 1985 but many times worse. Many hospitals and drugs I really started thinking about ending it. I was screaming on a daily basis. A Nightmare!
Knowing I had a one of a kind condition I pushed Neurologists and other doctors to try and start some
tests. Then some positive test results; Oligoclonal bands, Brain scans showing perfusion of the brain, cerebral angiogram indication of vasculitis, findings of small infarcts in the frontal lobe, indications of lupus and blood clotting. However treatments we not helping.
Whet to MAYO Clinic twice. Saw Dr. Orhun Kantarci Neurologist.
Conclusion: Horrible Sleep apnea! Got a CPAP. Zero help! Frustrated I had major throat, tongue, uvula and nasal surgery. Result: zero sleep apnea! 1 Year later feel I have only a short time to live. Or I just want it to end. It is something but what?
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