pseudotumor cerebri?

[liz8806]

i need help about which steps to take next.  i had a reg. eye appt 2 months ago where they said my optic nerve was swollen.  i was sent to neurologist and for CT scan to check for brain tumor. CT was clean.  the neurologist did a few quick tests at the office(exam lasted all of 5 min) and said..."i dont think you have pseudotumor cerebri and your nerve isnt swollen" then wrote me a script for Topamax.  I had an adverse reaction to the Topamax, so i made another appt with the neurologist.  he spent even less time in the room with me this time, did NO exam and just wrote me another script.  Non of the meds have helped my headaches, and i keep looking up symptoms of pseudotumor cerebri, and i have MOST of the symptoms.  some of the things i wouldnt have thought were related are listed as symptoms.  i have daily headaches and migrains like 3 times a week.  i made an appt with a new neurologist because i want to know whats going on...not just be put on meds.  

my question is....when they do the evaluation in the office...what are they looking for.???  the previous doc made me stand up, close my eyes(at which i felt dizzy.....but he didny comment on that being normal of not) he had me touch my nose then his finger?? and tell him how many fingers he was holding up.  i was just wondering what they are looking for? Example: are they looking for you to be really dizzy? to stumble?  im just clueless and frustrated?

thanks
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[DrNoopurMD]

Hi,

The tests that you have described are done to test coordination and cerebellar functions.
http://www.neurologychannel.com/neuroexam.shtml

It will help us to know the symptoms that you currently have.

Thanks

[Cath278]

Hi liz and sorry to hear you are having such a rough time. I have IIH/PTC.I had my first neuro exam in May and Im still not sure what they were looking for. I know that the criteria for IIh/PTC is
1) New headache, severe.
2)Problems with your eyes. Blurry vision etc which leads to nausea and dizziness.
3) Papillodema. (swollen optic nerves, but not every one with IIh will have this.)
4)Neurological defects. Like trying to walk a straight line,put one foot in front of the other, just like you had done. If there is high pressure in the brain, for what ever reason, you cant do these tests very well.
5) Clear Cat and MRI scans.
6) Opening pressure from a lumber puncture over 20.
Im glad to hear you are going to see a new neuro. Write down all your questions. When you see the neuro,if they try to hurry you,politely refuse to go until your questions are answered. When they see that you are prepared and have a list of questions Im sure they will help. If you dont understand what they are saying, write it down and come back and ask us. We will do  all we can  do to help. Make sure you keep all your apps! Good luck,Cath278