Who here has pseudotumor cerebri???

[bethaniet586]

I am just curious to see how many people have pseudotumor cerebri on this forum...?

[TJRasta]

Welcome to the group.  You must be very ambitious to be diagnosed with IIH and find and contribute to a support group on the same day!  And you were diagnosed within 2 months.  Where  are you?  Who are your Drs? How did they figure it out so fast?  Most stories I have read it takes much much longer to get this whole thing dialed in with many misdiagnosed along the way.  Please tell us your story.

You also sound like a lawyer or paralegal or someone whose occupation includes understanding of human rights.  That is a nice addition to the group that could be very helpful to some of us.  Thanks for your advise to Henricogirl.  I can not imagine being burdened with this illness at such a young age.  I hope we can all help her cope with it.

TJ

[Meisja]

Sorry, not Dioxin, Diamox (but I'm sure you all knew what I meant).

and Henricogirl, your comment "those LP are like your own personal party" was phreakin' hilarious-- PERFECT satire!

[Meisja]

Hi folks, I was just told of my IIH/PTC diagnosis today. I guess in a way I am somewhat lucky in that I had a quick diagnosis, though. I've been symptomatic (HORRIFIC headaches & double vision, etc.) for about two months. Started Dioxin today, which is helping enough that I can look at my computer screen long enough to find and say hi here. This seems like a great community, thanks for being here.

To Henricogirl; your diagnosis and specific symptoms should qualify you for *reasonable* accommodations to be made for you by your school under the ADA (or Americans with Disabilities Act).  Take this information above, and do some research on the net to help you learn more about what your rights are (and are not), and then try to come up with a few reasonable ideas of how your school may be able to help you overcome the disabling aspects of your  illness and have an equal opportunity in your education. Take your requests, and your legal research, to the school to begin a negotiation called the "interactive process" where both parties come together to find the best solution. Do a really good job and make your mom proud ;)

Good luck and hang in there!

[selmaS]

Hello to those with PTC and chiari as a result....u may want to stop by our chiari forum here on MedHelp.We may be able to answer ur chiari questions.

As for one that asked above about how on one MRI it was dx as chiari and the next one not...well we with chiari have asked the same thing and the answer lies with who is reading the MRI study and giving their opinion.

Chiari is misdx all the time and even when it is most NS are under the impression that u will not have symptoms from it and it is ignored.

To recieve propper treatment we need to travel to get to drs that have foucused their practice on chiari and related conditions such as PTC.

I am community leader in the chiari forum...if u have any questions please PM me or stop by the forum.

Godspeed
"selma"

[Henricogirl]

I know and you have to love the doc. appt. that come with PTC to. Plus those LP are like your own personal party.

[crystalhanzelka]

IH here too...fun times huh?