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[thereishope]

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Edited September 29, 2019 by Vickie

[cdnmom]

I, too have had Pseudo Tumor Cerebri. Got it at the age of 34, 4 months after having my first child (the one who may have Pandas). The docs here in Canada told me that they really don't know why people get it, but usually present itself in obese women. Well I was 140 pounds when I got it, so that was not the case for me. They also told me it could be hormonal related and the fact that I had just gone through pregnancy and given birth, that may have been what caused it. 3 years later I was pregnant with twins and was terrified the disease would return, but, it did not (leading me to believe that it was probably not the pregnancy either). I was also given the stat's you were quoted, that 1 in 100,000 people develop this. You may be onto to something here, very interesting.....also discouraging, because just like Pandas, the docs don't know much about this disease either.

[thereishope]

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Edited September 29, 2019 by Vickie

[cdnmom]

Vickie,

 

Thanks for the update.....maybe there are more people out there who have BIH than the doctors are aware of. My neurologist said he sees approx. 1 person/month with this condition.