FAQ/Help |
Calendar |
Search |
Today's Posts |
![]() |
|
New Member Introductions Welcome to our community! Come in and introduce yourself to other members!! |
Reply |
|
Thread Tools | Display Modes |
![]() |
#1 | ||
|
|||
Newly Joined
|
Hi,
I was diagnosed with psuedotumor cerebri in 2004 when I was 25. I began to feel weird, have headaches and was seeing black spots. After a couple of days, after initially seeing the spots and feeling not right with severe headaches, I went partially blind. I could see everything surrounding someone's face, but not their face. I went to the doctor thinking that I possibly had diabetes, in which I was told I did not. The doctor sent me to an neuropthamologist to get checked out. The doctor told me I had pseudotumor cerebri. This was upsetting to hear, as I thought I had a brain tumor, but he explained to me what it was. Those words scared me a lot! I had a MRI that came back ok and they ran several eye tests on me. I ended up going to a neurologist the same day and the next day I had an emergency lumbar puncture. The procedure was painful, but it instantly cleared up my vision and I felt much better. I went to an opthamologist and he told me that I had some damage to my vision due to the disease, so I had to have nerve fenestrations in both eyes. I was unable to take any medications, back then because I was allergic to them. The doctors have told me that the weight, with the combination of taking orthotrycycaline (birth control) and acutane (for acne) may have caused this disease. I have no history of family members that I know of that have had this disease. After two years, I had to have another lumbar puncture because I had symptoms again. Even though, the symptoms were smaller and the amount of fluid taken out was smaller. In 2009, I had a third lumbar puncture and it was less again. Since then, I have lost 70 lbs. and have felt great, with no symptoms, until a couple of weeks ago. I am going to go back to the neurologist to get tested. I had thought it had left because of the weight I have lost and the healthy lifestyle I live. I still need to lose more weight, but I am about 165lb. The doctors have told me that, even though, I have lost weight, this disease could come back every 4 to 5 years. I am hoping that my diagnosis is good, but if I need to be treated, then this is something I have to live with. I try to stay positive and live my life to the fullest as much as I can ![]() ![]() |
||
![]() |
![]() |
![]() |
#2 | |||
|
||||
Legendary
|
danielle, ![]() Thank you so much for sharing your condition with many friends here. It is dear one like yourself that help others with the situtation you are goinf with. Here is a forum where you will find others like yourself for assistance. http://neurotalk.psychcentral.com/forum2.html Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. ![]() Darlene ![]()
__________________
. "Life without God is like an unsharpened pencil -- it has no point.
|
|||
![]() |
![]() |
![]() |
#3 | ||
|
|||
Newly Joined
|
Quote:
gosh it fightens me to learn that ur only 165lbs im 5'4 and been 300+ lbs for at least 3 to 4 yrs of my life and even before that since middle school ive always been 200+ lbs??? so 165lbs thats like barbie doll status to me!? staying positive really helps though. just curious how tall are u? just so i know and how much weight shud u lose for this to go away? |
||
![]() |
![]() |
![]() |
#4 | ||
|
|||
Grand Magnate
|
![]()
__________________
Kitt -------------------------------------------------------------------------------------------------------- "It is what it is." |
||
![]() |
![]() |
Reply |
|
|
![]() |
||||
Thread | Forum | |||
Pseudotumor Cerebri | New Member Introductions | |||
Living with pseudotumor cerebri | New Member Introductions | |||
interesting video, LIVING WELL CHALLENGE: THE 10 COMMANDMENTS OF LIVING WELL WITH PAR | Parkinson's Disease | |||
Psuedotumor Cerebri | New Member Introductions | |||
Psuedotumor Cerebri, ICP and Accutane Use | General Health Conditions & Rare Disorders |