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Soooo.... When I was first diagnosed with pseudotumor in the

Soooo.... When I was first diagnosed...
Soooo....
When I was first diagnosed with pseudotumor in the ER, the doc there didn't seem to really know much about the disease, but after he looked it up in something he seemed to know a little more.
I was told to follow up with a visit to a clinic and to see a neurologist.
I went to a clinic where I was seen by a physician's assistant. She told me I needed to see a neurologist ASAP. She said, "I've never even heard of diamox, you don't want me to be prescribing this for you. You need to see a neuro." But her clinic didn't have any way to send me to a neuro anytime soon. I was encouraged to call other clinics nearby to where I live and try to get in to see a neurologist.
So, in the meantime, I went back to see my opthalmologist. He said the papilledema has improved a little. He was happy. I asked him if he would be checking my electrolytes now that I was on diamox. He said he didn't want to be the person doing that and I needed to talk to my neurologist or primary care person for that.
I saw another PCP at another clinic, who said to me, "ok, you're just here to see neurology. I getcha. We'll set you up an appt with our neurologist."
So, last week, I finally got to see a neurologist, a month and a week after I was first diagnosed in the ER. And do you know what he said? "Why are you here? You don't need me, your opthalmologist is the one who should be handling your IIH. He has the right tools for the job, the field of vision test. I don't even give that test. You don't need to see me, you need to be going to him."
Huh?
Wow...so, how is this USUALLY handled? Do I need to find another neuro ASAP, or do I need to just see an opthalmologist and have my electrolytes checked periodically by my PCP, or what?
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Answered in 6 minutes by:
4/17/2013
Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 9,000
Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
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Hi. Well I really cannot comment on what a Neurologist does or doesn't do, I have IIH patients in my practice. Maybe because you said headaches have not been a problem, that the neurologist feels that you just need your field testing and indirect ophthy examination periodically, and the ophthy can adjust your diamox and check your electrolytes if needed. The problem comes up when you need another LP, who is doing that? That is what I would tell the neurologist, you need to be available to do my LP, or refer me to another doc for the LP as needed. If he declines, then I would say you need another neurologist. I hope that helps Dr Frank T
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Customer reply replied 4 years ago

Ya - thanks. I have been getting pretty steady headaches now, everyday, for about the past two weeks. Not fun. Scary, actually...I was hoping this would go away, instead it seems to be getting worse.

How often do IIH patients usually get LP's done? I had mine done in the ER under floroscopy - and I have heard horror stories on the IIH support groups from people having LP's done without floroscopy..I think I'd prefer to keep having it done that way. Do I ask a neuro to do it that way or does a PCP set me up with a radiology appt for that?

HI. It is done differently in different places. I have a radiologist that is from Australia and does it under fluoroscopy, so I send my patients to him for the LP. Your PCP or Ophthy can do that as well. I think if you are now having constant headaches, you need a neurologist just to monitor them for you. He should have a mechanism to get the LP done under fluoro.
Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 9,000
Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
Verified
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Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 9,000
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Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.

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