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 Newly diagnosed with IIH. Looking for guidance

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iam_myownheart
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PostSubject: Newly diagnosed with IIH. Looking for guidance   Sat Dec 10, 2016 11:51 pm

I have very recently been diagnosed with Pseudotumor Cerebri. I have seen three different specialist in the last week and they all said the same thing. I have to lose weight. I have had a pressure test on both eyes, and all this different doctors performed individual visual examination of my eyes, and I had about a hundred pictures taken of my eyeballs. 
The most recent specialist referred me to a neuro ophthalmologist, and she informed me that I will have to undergo an mri to get an updated picture of my brain, as my mri from march is too old and might not show information in the picture that might have only recently developed. I'm just wondering what else to expect. What others tests will i have to sit through and what can i expect as far as treatment.
Any feedback is welcome. 
Thank you for reading
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Sophiasmom
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PostSubject: Re: Newly diagnosed with IIH. Looking for guidance   Mon Dec 12, 2016 5:25 am

hi, you need a brain MRI to rule out anything else causing the papilledema.  you need a spinal tap to confirm that your intracranial pressure is elevated.  I think you should have an MRV of both neck and brain in order to rule out secondary causes.  they can't conclude it's from your weight without ruling out secondary causes.  one of which they should investigate is obstructive sleep apnea, and also coagulation problems, autoimmune disease, and hormonal issues.  not everyone gets better with weight loss: I didn't.  I lost weight from being so ill after I developed symptoms of IIH, but 40 lb did nothing for me.  jaw surgery put me into remission.
FYI you might want to post in "group huddle" or "women with IIH", I think that's where most people look for new messages.

I'm so sorry, I know this must be scary to be dealing with.
I saw an email yesterday, you were wondering about your username.  I was out of town and couldn't respond.  I hope you got that sorted out.
Deb
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medmisfit
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PostSubject: Re: Newly diagnosed with IIH. Looking for guidance   Tue Dec 13, 2016 4:30 pm

It does seem like you're on the right track, unfortunately not everyone is as thorough as we'd like. I would assume that they'll do a spinal tap if MRI is ok. If your symptoms improve once some spinal fluid is removed, that confirms IIH.

It can be treated with medications, so I would talk to them about options while you're trying to lose the weight. Main thing is to preserve vision, so they should agree. Weight loss doesn't help everyone and some of us gained weight after diagnosis, but it doesn't hurt to try. We encourage everyone to be as healthy as they can, but don't get discouraged if symptoms don't improve. It will help you deal with things a little easier.

You also may want to start a symptom log, so you can track any changes. There's an example in the Useful Guides and Print Outs section. Let us know if you have any trouble finding it or have any further questions.

Take care,
Julie
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