Late Diagnosis Cost Me My Career, My Life...
Hello MS Friends,
My name is Lucie B, I just turned 48 and was diagnosed with MS in 2007. My life has been one living hell health wise!
From splitting, all out painful headaches that never go away, go to bed with them, wake up with them, intense pain in my eyes...so much pain that it sends me into a whirlwind of nausea and vomiting, and intractable insomnia....I never sleep! not night, not day! Its as if something has completely wiped out my circadian and sleep cycle..and nothing works!
Ive gone to neurologists for years and was told it was STRESS..that I needed to relax, on and on...I started having these symptoms way before 2007 and they were all dismissed as migraines, mild depression, etc....well, the scans taken a couple of weeks ago, CLEARLY show lesions from way before 2007...lesions in the corpus callosum, hypothalamic area...the parietal-temporal lobes teem with nodular and linear lesions...as well as the occipital areas.
Since after college, I had had some cognitive dysfunction...I did tell my doctors, but again, was told it was stress. When I started Medical School the symptoms became worse and worse, the stabbing eye pain and some eyelid and facial drooping were quite evident, but again, told it was migraines. I was finally diagnosed with optic neuralgia then later, optic neuritis...but the cognitive dysfunction continued...I could not read and comprehend well...I couldnt retain information read 1 min prior, I had the headaches that wouldnt go away, the insomnia became worse. The doctors said I had depression but I didnt!!
There was no reason for me to have depression because I was at the top of my game, besides having the health issues and the all out frustration of knowing something was wrong and no one being able to diagnose what was wrong with me. In December this year, I decided to be more aggressive and find more avant garde neurologists, who would really really LISTEN TO ME! I finally did! They did a battery of tests and scans and voila! LESIONS all over my brain, with some AV malformations in the occipital areas, on and on.
One of the reasons why I am opening up in the forum is because for years, I have felt so alone and felt so ashamed because I had to withdraw from my medical residency program because of the neurological problems I was having...and the shame of dropping out because I couldnt function cognitively as years before, nor was I able to tolerate the headaches and the insomnia. For the first time since medical school, I found doctors who listened to me, took me seriously and not dismissed my symptoms as stress and depression and UNDERSTOOD my feelings and frustrations over the years.
Had I been properly diagnosed and treated years ago, I would have still had my medical career! So to all my fellow MS Warriors and Survivors, find the kind of doctors that care and listen to you..not ones who make you feel like a number or crazy! To all the doctors out there, PLEASE PLEASE PLEASE DONT DISMISS OR MIGHT LIGHT OF A PATIENT'S SYMPTOMS...NO MATTER HOW TRIVIAL IT MAY BE!!Listen to every detail and take it serious! Please! I am in tears as I write this because all my life I have worked so hard to become a top notch physician...Years later, Ive come to find out, it wasnt stress or in my head...IT WAS MS!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
My name is Lucie B, I just turned 48 and was diagnosed with MS in 2007. My life has been one living hell health wise!
From splitting, all out painful headaches that never go away, go to bed with them, wake up with them, intense pain in my eyes...so much pain that it sends me into a whirlwind of nausea and vomiting, and intractable insomnia....I never sleep! not night, not day! Its as if something has completely wiped out my circadian and sleep cycle..and nothing works!
Ive gone to neurologists for years and was told it was STRESS..that I needed to relax, on and on...I started having these symptoms way before 2007 and they were all dismissed as migraines, mild depression, etc....well, the scans taken a couple of weeks ago, CLEARLY show lesions from way before 2007...lesions in the corpus callosum, hypothalamic area...the parietal-temporal lobes teem with nodular and linear lesions...as well as the occipital areas.
Since after college, I had had some cognitive dysfunction...I did tell my doctors, but again, was told it was stress. When I started Medical School the symptoms became worse and worse, the stabbing eye pain and some eyelid and facial drooping were quite evident, but again, told it was migraines. I was finally diagnosed with optic neuralgia then later, optic neuritis...but the cognitive dysfunction continued...I could not read and comprehend well...I couldnt retain information read 1 min prior, I had the headaches that wouldnt go away, the insomnia became worse. The doctors said I had depression but I didnt!!
There was no reason for me to have depression because I was at the top of my game, besides having the health issues and the all out frustration of knowing something was wrong and no one being able to diagnose what was wrong with me. In December this year, I decided to be more aggressive and find more avant garde neurologists, who would really really LISTEN TO ME! I finally did! They did a battery of tests and scans and voila! LESIONS all over my brain, with some AV malformations in the occipital areas, on and on.
One of the reasons why I am opening up in the forum is because for years, I have felt so alone and felt so ashamed because I had to withdraw from my medical residency program because of the neurological problems I was having...and the shame of dropping out because I couldnt function cognitively as years before, nor was I able to tolerate the headaches and the insomnia. For the first time since medical school, I found doctors who listened to me, took me seriously and not dismissed my symptoms as stress and depression and UNDERSTOOD my feelings and frustrations over the years.
Had I been properly diagnosed and treated years ago, I would have still had my medical career! So to all my fellow MS Warriors and Survivors, find the kind of doctors that care and listen to you..not ones who make you feel like a number or crazy! To all the doctors out there, PLEASE PLEASE PLEASE DONT DISMISS OR MIGHT LIGHT OF A PATIENT'S SYMPTOMS...NO MATTER HOW TRIVIAL IT MAY BE!!Listen to every detail and take it serious! Please! I am in tears as I write this because all my life I have worked so hard to become a top notch physician...Years later, Ive come to find out, it wasnt stress or in my head...IT WAS MS!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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