Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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aimhigh4once 07/24/2014

I would like to form support group in Michigan. This would be a face to face either in the hospital setting or for more casual we could meet at a Panera or Star Bucks. The Grand Rapids area would be great for me as it is only about 30 to 45 minutes from me depending on which side of GR we are talking about.

Let me know if anyone is out there.....I feel like the only Michigander with PTC but according to statistics there should be at least 98 of us :) Blessings, Aim

deleted_user 07/26/2014

I am from michigan too! I'm by the detroit area, but at least there's someone else in the state as well! It's weird, when I was diagnosed (back in May), the ophthalmologist I was seeing said there was someone who had an appt. with her right after me was diagnosed with ptc too! Very strange considering how rare ptc is! But even though we're too far to do face to face meetings, I'll be here online to talk if needed!

aimhigh4once 07/26/2014

Hi thampton :) I'm originally from Toledo and I have family in Pontiac. It is interesting that there would be 2 people in one area. My first neurologist I don't think even have heard of PTC because she seemed quite uncomfortable about treating me with a higher dosage of Diamox than the 1000mg. She wanted to go right to a shunt where I was like "time out" I want a second opinion.

I'm here too if you need to talk. Last week was the worst week I have had with this and I refuse to cave in to it....though I did emotionally break down. I just don't want it to win and I don't want it controlling my life. I hope you have a great night. Aim

riverdlc 02/12/2015

I live in flint. Suggestions on docs.

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