You will (hopefully) talk a lot about your history, have the general. Neuro check (hands, arms, feet, legs, walking, tongue, follow the pen with your eyes, squeeze my fingers, reflexes, etc.) and then be scheduled for blood work and at the very least an MRI. Nothing too invasive, you probably won't even have to get undressed. A prudent and thorough neurologist needs to rule OUT everything else before coming to the IIH/PTC conclusion since there is no definitive test to say you have it, that's the sucky part. Hope this helps!

The eye doctor after some texts diagnosed me with it, but I think they don't make those diagnoses till after more texts are ran, or at least this is what Ive found out.

what do they look for in blood work?

My neuro took blood, then some more, then some more and next week, even some more. She ran blood work for everything from simple CBC's to Lupus panels, thyroid, to MS (in combo with the spinal fluid). Next week, I am going for an MRV and another extended panel of blood work to rule out one more thing that has sometimes shown up in atypical cases of PTC. Again, it's the 'rule it out' in order to make the call since there is no test they can do that will tell them definitively that you have it. Besides, no harm in having a good record of blood work every so often. Hope this helps!

Hello,
At my first Neurology Appt I went to a Neurologist that mostly deals with PTC. I had also been diagnosed through my Ophthalmologist who had ran various eye test but he also had me complete and MRI of the brain with and without contrast which was also one of the first questions my Neurologist asked me about; to me that seems to be the first important step. Then my Neurologist said he wanted me to have a lumbar puncture to verify further the PTC diagnosis and see how high my pressure is. My neurologist explained to me that papilledema is one of the more serious symptoms of PTC because it can make you go blind rather quickly if left untreated. I had my reflexes checked as well as my vision, and a cognitive recognition test. The assistant took my blood pressure and my measurements and they asked me my weight (which unknown to me I gave them a much lower one then what I started out at UGH!) I am about to have my lumbar puncture with an MRA and MRV next Thursday to check my pressure how quickly it builds up and also if I have a blockage that could be causing my pressure to be high. PTC does not have a known cause my Neurologist explained to me that there is always dual causes that mix to cause PTC and finding them to treat them is the difficult part.

thank you everyone for all the information, I just want some relief. I have good days and bad days. I am worried about not being able to work, since I just was promoted.

I also have my first neurologist appointment next Thursday. I am beyond scared because I don't know what they are planning on doing. Like you, I was diagnosed by an optometrist, ophthalmologist and a retina specialist. I was under the impression they were just going to do a spinal tap right then and there which freaks me out.. Does anyone know if they usually do one right away?

brittniel: In my case, I went for the MRI with and without contrast first, got the results, and once they determined it was not a brain tumor or MS, or anything else, I was sent for the Lumbar Puncture (spinal tap).

I assume that they will send you for an MRI first, then for the LP. Like you, I was pretty nervous about the whole thing, but it really is better to know what you're up against. And as far as the LP goes, I asked if they could give me something mild for my anxiousness, and they did. The procedure was surprisingly painless for me (the radiologist who performed my LP was great), but it was the headache I got afterwards that was bad. As everyone here can tell you, you really do need to stay completely flat for 24 hours after the LP. This will help to prevent you from getting a leak, which causes the terrible headache.

Good luck at your appointment next Thursday - and keep asking questions here, so that you'll know what to ask when you see the doctor. Take notes while you're with the doctor, because you will forget the things you are told. If possible, have someone go with you - two sets of ears to hear all the info are better than one.

Bottom line: You are our own best advocate! Ask what you need to ask and do what you need to do to take care of yourself.

in my case 5 different doctors kept dismissing my symptoms as oh its just anxiety! it finally took a 6th doctor and for me to start going blind (I was spending about 40% of my day unable to see) for him to do a ct. he found I had a brain tumor and after an mri to confirm I drove 5 hours to one of the best hospitals, I was in their for 8 days they ran every test possible, I seen the opthomologist and several neurologist and it was confirmed my tumor wasn't a problem I had PTC, they went to do a LP but that put me in the ICU which you shouldn't have to worry cause that's extremely rare. but taking out my birth control and taking diamox has done wonders for me! I am also seeing one of the best neuro surgeons, but have to drive 5 hours just to go to all my doctor appointments which is killing my pocket being a single mom of 3. Make sure they do lots of work ups!

So my first neuro appt went ok, since i havent had an mri or ct scan doctor is recommending i have one and also a lumbar puncture to see how high the pressure is. He also explained why the side effects of diamox why they happen, i was given by my regular doctor but she didnt know enough about it to advise me to keep taking it. And lasix that i have how that works. So now i what to be scheduled for tests. Can anyone tell me about the lumbar puncture. I am terrified to have one. Good news is he didnt think i had anything else going on since reflex and other tests he did looked good.

Thank you guys for all of the information! What is the difference in having contrast or having no contrast? They gave me a CT scan with contrast already.

Hi Britt,
The difference is the level of detail in the scan itself. MRIs have the most detailing of the internal body than any other scan, it is also the most expensive thats why they usually will order a CT first. The difference with and without contrast also gives more depth in the picture that the radiologist is able to see. For instance in a non contrast scan they can see that there are not masses, in a contrast scan they are more able to see if there is a blockage of any type.