Angel77
04-14-2004, 08:14 PM
Hi! They found out an injury after I got sick of no answers and started doing all my own research. I gathered up all my scans, records, ordered the emergency records and started searching. My first indication was that I showed no signs of narcolepsy before the head injury. So I started there.
Most narcoleptics test positive for a certain HLA blood titer...I didn't have it, nor did I have any known relatives with narcolepsy. I was sent by a doctor who didn't believe my test results for narcolepsy in for seizure testing, which included an MRI. On the MRI it showed I had a large mass of blood vessels in the white matter on the frontal lobe...which is where I took the initial injury.
It isn't 100%, nothing is with a brain injury, unless it's documented from the start. But they were too busy with my face...I took off a good portion of my cheek, almost to the bone, a lot of my top lip, 2-3" laceration above my eyebrow, gravel holes everywhere and another lac in the back of my head. From research I found that force sufficient enough to cause a lac on the forhead is also enough force to sustain a brain injury.
It was never addressed. I was out of school for two weeks and informed the nurse who removed the stitches from the front of my head that I had passed out after trying to go to school to get my homework...she said, "Don't worry, that's common after a head injury." Yet another sign that things weren't right. My family ignored it and it continued to worsen. I got pregnant shortly after (17) and at 19 dx's w/ Graves...so it was all attributed to that.
I had constant migraines from taking a fracture chip out of my C5 or 6 and shifted my pelvis. They missed that too. Some of the consequences of it have been fatigue, memory problems, emotional problems, over-sensitivity to sound and touch, my pelvis has continued to shift and has made my right leg 1/2" longer and caused the ligaments to stretch and causes a lot of pain.
It was just all missed because no doctor would sit in a room long enough to listen, nor would they ask questions about it. IMO, they had enough evidence to suspect it, but ignored it. I am now 10yrs post-injury and have been told that the damage is now permanent. Had it been caught in the first couple years, I had a better chance. Now I can't remember things like: not starting fires in the oven, turning it off, taking my meds, where I left my meds, if I ate for the day, can't find my words and look like an idiot, can't concentrate as well as I used to, troubles reading and comprehending and so many more that I can't even think about right now.
I know this is probably more than you wanted to know, but felt it worth mentioning, just in case someone else is suffering with the same problems. I don't want to see anyone else go for 10yrs before finding out. If you have more questions, holler....never know what people want to know and what turns into too much information...but hey, I've got enough problems to blame it on!!! LOL Brain damage, narcolepsy, being blonde or having the hypothyroid stupids!! Blonde was the first indication my brain was not all there! LOL
Toodles
Most narcoleptics test positive for a certain HLA blood titer...I didn't have it, nor did I have any known relatives with narcolepsy. I was sent by a doctor who didn't believe my test results for narcolepsy in for seizure testing, which included an MRI. On the MRI it showed I had a large mass of blood vessels in the white matter on the frontal lobe...which is where I took the initial injury.
It isn't 100%, nothing is with a brain injury, unless it's documented from the start. But they were too busy with my face...I took off a good portion of my cheek, almost to the bone, a lot of my top lip, 2-3" laceration above my eyebrow, gravel holes everywhere and another lac in the back of my head. From research I found that force sufficient enough to cause a lac on the forhead is also enough force to sustain a brain injury.
It was never addressed. I was out of school for two weeks and informed the nurse who removed the stitches from the front of my head that I had passed out after trying to go to school to get my homework...she said, "Don't worry, that's common after a head injury." Yet another sign that things weren't right. My family ignored it and it continued to worsen. I got pregnant shortly after (17) and at 19 dx's w/ Graves...so it was all attributed to that.
I had constant migraines from taking a fracture chip out of my C5 or 6 and shifted my pelvis. They missed that too. Some of the consequences of it have been fatigue, memory problems, emotional problems, over-sensitivity to sound and touch, my pelvis has continued to shift and has made my right leg 1/2" longer and caused the ligaments to stretch and causes a lot of pain.
It was just all missed because no doctor would sit in a room long enough to listen, nor would they ask questions about it. IMO, they had enough evidence to suspect it, but ignored it. I am now 10yrs post-injury and have been told that the damage is now permanent. Had it been caught in the first couple years, I had a better chance. Now I can't remember things like: not starting fires in the oven, turning it off, taking my meds, where I left my meds, if I ate for the day, can't find my words and look like an idiot, can't concentrate as well as I used to, troubles reading and comprehending and so many more that I can't even think about right now.
I know this is probably more than you wanted to know, but felt it worth mentioning, just in case someone else is suffering with the same problems. I don't want to see anyone else go for 10yrs before finding out. If you have more questions, holler....never know what people want to know and what turns into too much information...but hey, I've got enough problems to blame it on!!! LOL Brain damage, narcolepsy, being blonde or having the hypothyroid stupids!! Blonde was the first indication my brain was not all there! LOL
Toodles

