[danielle24]

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 I work two jobs and go to school to be a certified teacher. I am a teacher now and have a second job working with animals on the side. My advice to anyone is believe that you will be better if you stay positive and live your life normally as much as possible. Do the things you love and don't let this disease take over. Try to stay as healthy as possible and keep being positive

[Darlene]

danielle,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place. I see you have found the PT forum which is the forum where you will assistances with your questions.

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

[Sonolicious]

Originally Posted by danielle24

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 I work two jobs and go to school to be a certified teacher. I am a teacher now and have a second job working with animals on the side. My advice to anyone is believe that you will be better if you stay positive and live your life normally as much as possible. Do the things you love and don't let this disease take over. Try to stay as healthy as possible and keep being positive

hi danielle,

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?

[Kitt]

Welcome danielle24.