I have PTC too.  When I was 5,  I was really sick. We go to the doctor, but he couldn't find something. I couldn't go to school because I the sounds are too hard for my head. 2 years later, my aunt was searching on the net and found a article with Pseudo Tumor Cerebri. She has read it to my mom, and my mom has read it to the doctor. He said, that this could be the sickness what we are looked for.


In the first hospital the couldn't help me, in the second also not. In the third the wouldn't help me because they doesn't know what it is! And in the fourth hospital,, the operate me. I was really sick again. A get a shunt in my back.

Now I'm many times sick from school. And people in my class think that I'm not sick.  That's very frustrated, and I'm afraid to go to school, because of them.

Greetings Mazzel, from The Netherlands.

mazzel114 mazzel114
18-21, F
5 Responses May 14, 2007

i also have pseudotumor, but there is this new surgery to help it i was the 11th person to get it, i just had it last march, and havent had any symptoms since !

Wow I wasn't aware PTC affected people as young as five! That's really surprising to me, as I assumed it was primarily adolescent girls who had this problem (I was diagnosed at age 17). <br />
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Also, I had the same experience with some people thinking I wasn't actually sick. I remember coming back to school after having spent the previous Sunday in the emergency room and having my favorite teacher say "You don't look sick." While I realize he meant no harm and was simply making an observation, I felt a little offended and completely alone in the pain I was experiencing at the hands of this awful illness. <br />
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Best of luck to you. I wish you the best in your fight with IH. <br />
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-- Lilia

I know exactly how you feel, I've had to practically drop out of school this semester. The thing is most people don't remember that this is a disease that works on the brain and eye not the outside, so when they see me I look normal, but im not, they think im faking sometimes

I understand what you are going through. Before I was diagnosed and I had my headaches people thought I was faking. I missed the whoe first 6 weeks of my senior year because I was sick. Just remember prayer changes things.

I am so sorry that you have had such an awful time with this horrible disease! Do you pray? Go to church? God heals people, even in todays world. <br />
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Keep your chin up, don't let it get you down.