My name is Katie. I am 26 and I was diagnosed with PTC in August. What a roller coaster ride these last couple of months have been!!
In April/May, I started having issues with my vision. I figured it was stress due to life and tried my best to ignore it. When it got worse, I went to my eye doctor and he sent me to a specialist. The specialist confirmed that both of my optic nerves were swollen and could be because of different reasons. I had an MRI done and it was fine. So, I went to see a neurologist. After the first opening pressure reading of over 30, I was dianosed with PTC and put on diamox.
I have had two more LP. The second one resulted in a CSF leak and bed rest for a week. The third LP was good. Opening pressure was 23 and I don't have to see my neurologist til January and the swelling in my optic nerves is gone for now. 1000 mg of diamox a day seems to be the ticket.
I am slowing trying to get back to a "normal" life, whatever that is. In January, we start talking about reducing the diamox and that's got me a little worried but I will cross that bridge when I get there!