I have had an interesting fight with this thus far. All my life I have always been tired, mostly noticeable after eating anything, I would fall asleep like 1-2 minutes after i ate. We never thought anything about it, I have been fine all my life 35 years of perfect health. Last year July 2011, something happened to change my health. I had my first fever and migraine headaches in july of 2011. I fought them off by reading online about home redmedies. they finally disappeared after like 5 days. I returned to work that following friday. for some unknown reason I started falling asleep. I took the whole next 4 workdays off day by day. I slept 3 of 4 of those days, and the days i couldn't sleep i had mini naps constantly. I started noticing a lot more like I would start a chat on facebook, or maybe be playing a game, or even on a program called imvu, or irc and i would be chatting. I would close my eyes or i would just blank out and come back and notice the person being upset with me cause i have talked for minutes, hours. that was one of the thing things that were becoming a key. I finally scheduled an appointment with my doctor July 19th 2011 and he did every physical test and also ordered lab work, and it all came back perfect. 8 vilers of blood for all these tests and yes the other as well. tested me for everything and nothing came back. They noticed I could barely stay awake in the office and so he wrote me up a note for my work saying sleeping disorder won't be able to return for about 3 months pending sleep study
I had called and earliest appt was august 15th 2011, so i scheduled it and got my consultation, asked me a bunch of questions and basically he said we need to have you in a sleep study so i picked the day it was end of august, arrived at 7 pm they took 1-2 hours to hook me up, so finally got me laid down for my PSG, this is funny cause doctor told me she walked out of the door and on my charts on my PSG I was asleep like 1 minute later. We kinda had a laugh at that.
time in bed 529 mins sleep time 493.5 mins REM sleep was 111 minutes
basically I had a good nights sleep
my MSLT was immediately after woke up at 6:30 am and they made me take 5 naps through out the day 2 hour intermissions
my MSLT is 4:45 no rem and no cataplexy (have developed it now)
So they put me on provogil, i took it started september 1st 2011 and by december 22nd 2011, i had to return to doctor cause the pro vigil no longer had an affect on me, so they put me on nuvigil and i been on that ever since. However I am also very dizzy 24/7, I constantly sleep doesn't matter where, I even zone out at times and my memory is completely messed up. I should mention that last year before july I was programming in 7 programming languages, ever since this attack I am lucky to do web design and basic programming. Its like it just left.
So I returned to my specialist and I'm telling him about my symptoms I am experiencing and he's like nuvigil is not going to cause that. So they set me up with a neurologist. I have had a heck of a time with the neurologists first one forgot about me the secretary actually said we tried calling once and i set ur papers to the side and seem to misplace them so have ur doctor fax the items over again. So I did and turns out that neurologist can't do what I needed.
So i finally got a neurologist appt set up and this was in may 2012 yes the going back and forth between dr.'s took that long. He did a bunch of tests on me and wrote a bunch of stuff down. Scheduled me for a MRI and an EEG May 2nd 2012
I had both those tests done, now this is the crappy part, i was getting the run around about my results for the last 1 1/2 months, (lawsuit is possible against them)
anyways I got my results.
EEG states this for impression
Abnormal sleep and awake electroencephalogram (including stage 1 sleep) because of epileptiform discharges consisting of: a) bilateral temporal rhythmic theta activity spike activity located in both temporal regions. No background slowing or eletrographic seizures noted.
thats my EEG
My MRI states this
everything is normal in cerebrum brainstem cerebellum ventricles basal cisterns calvarium skull base
Sinuses apparently I have Maxillary Sinus Disease I read it can be treated by amoxicillan
Other says this
large temperol lobe superficial drainage vein best seen on [the images for my brain scans]
Large superficial left temporal drainage vein inferiorly; meduallary venous malformation
I read up on medullary venous malformation, its super rare in temporal lobe.
Is my MRI results saying I have a tumor in my temporal lobe? Please any experts comment on this. I have my doctor appointment June 19th 2012 and this will be first time he will see the results I had to get them myself cause the hospital never sent them to my doctor.
Diagnosis, And Ongoing Testing
1 reply to this topic
Posted 19 June 2012 - 04:16 PM
Hi Macman, sorry to hear you are having such a rough time and getting the runaround from your providers but it sounds like you are finally on the right track for some sort of diagnosis. Please try not to stress or frighten yourself about the MRI report until you can see the doctor and he/she can explain everything to you. I worked in medical imaging for many years and read more reports than I can remember so I know all those big words sound really scary. Radiologists are required to comment on every single detail in order to help the ordering physician get a diagnosis and sometimes the language of the reports can sound ominous when it may not be. I do not know much about the vascular anatomy or physiology of the brain because I worked mainly in studies where the "neck down" was the area of concern so unfortunately I can't answer any of your questions. I know how hard it is to not get online and spend hours trying to research the terms in the reports because I've done it myself with my own studies. It will drive you nuts reading all those case studies and I can tell you that most of the published studies are the worst possible scenarios so keep that in mind. This is why patients are not normally given the reports of tests before they see the doctor. I know how awful the uncertainty is but just try to stay calm until you can see the neurologist again and please keep us posted.