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Research papers open your eyes...A RANT!

Sep 10, 2008 - 5 comments
Tags:

Pseudotumor cerebri

,

PTC

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iih



Currently my com220 instructor has asked me to do a research paper on IIH so she and my class can learn of this condition no sweat right? wrong! The more and more research I do the more chz'd off I get. 1 and only 1 article has noted this condition as fatal if untreated. 1 and only 1 article has noted brain damage in patients who have not sucessfully responded to treatment. 1 article has an actualy list of syptoms besides a headache. The more I read on the more and more I realize doctors everywhere have put this condition on the back burner, made it no big deal, why bother not my problem type of additude. 1 article even says a antibiotic can cause IIH by causing the tissue to no longer absorb CSF, hmm I am going to assume that is not on the warning label!!!! rrrRRrrr.... I am no less than p*ssed off right now.

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by rosemary67, Sep 10, 2008
thanks a lot, this is some scary ****. My appointment is moved up to sep 23, i hope they do something that day besides consultation. I have worn glasses all my life, but i feel like i am wearing someone elses glasses right now, thats how bad it is and the eye dr tells me my vision is 20 20


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by bethaniet586, Sep 10, 2008
sry didn't mean to scare you but it's true and it made me mad, that no one has made it common knowledge. I hope all goes well and yes this can mess with your eyes bad, I can't wear my glasses from my recent eye visit because my vision has changed since then.

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by medchick0523, Sep 10, 2008
There is an article on IIH, on eMedicine, if you type "PTC/IIH eMedicine" in google it'll come up with it. Great article, and actually very thorough. I don't know if that's the one you've already found or not, but I think it's a good one.

I'm not so sure they are putting in on the back burner because it's not their problem, I think it's more than they don't know what to do about it. It's like any other incurable disease, there are the known treatments to manage symptoms and that's all that can be done until a cure is found. Unfortunately because IIH is a rare disorder that's not likely to come anytime soon, there are only a couple of thousand enrolled in IHRF, and I bet you no two cases are the same. It'll take several thousand more to be able to pinpoint cause(s).

I know it's upsetting that it's so incredibly difficult to find any information on the long term effects of IH, especially unsuccessfully treated IH -- like the three of us! I understand you're both upset (forgive me for this, I'm just in one of those carefree moods today-- any other day I would be livid too), just take it day by day. That's all you can do at this point in time.

Hugs!

Samantha

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by bethaniet586, Sep 10, 2008
Yeah the article saying "fatal if untreated" was on e-medicine. I normally would not be so mad, since no two articles are never alike, for god sake I left the doctors two years ago thinkin I had S something. lol for some reason I just got highly chz'd.

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by Cath278, Sep 14, 2008
Hey you guys! Glad I got you all together. I got so fed up with  lack of any information or facts, I thought it was just limited to Ireland God help me, that i wrote to the Intracranial Hypertention Registry in the U.S.A. They sent a registration form ,which is pages long.I thought not being from the US i would not be eligible but quite the contrary. Even sent me a e=mail to make sure I understood the questions, and ! will phone to help f I need it.Why? They are desperate to collect  any information they can get to help us and others like us.They are currently trying to get funding but dont have enought people on board yet.Or, are there that many us us? We all know that this a rare illness, and between us all and all the work we do looking things up, talking and asking questions, etc, we should have a cure by now! but we are still floundering, running in circles.If any one is interested i will pm the address. I dont think I can do it from here.You are not allowed.Just had a thought, you probably have joined already! but if some one hasnt yet..

And Sam,who is having a carefree day, hug it and squezze it and try not to let it go!
Im just so glad you are all her. So selfish of me, but Ive been on my own ,with this illness a long time.Its so good to say to any one of you "its a bad day" and you get it.No neeed to explain. My best friend is so good but always say the wrong thing. Not her fault really, Ive only told her the half of it. But the other day when I was down she got at me with all these platitudes and gee up talk and I told her a few things. Result? Me picking this darling , sobbing,wreak off the floor. A bit too much information I think! Spent the next hour comforting her! Got to say , I do things in style. Now my next problem is ,my husband is coming with me to the next neuro app. I ve only told him half of whats giong on. he gets so upset with the little things... Think I will have to call my neuro and tell her to give the water downed version to him. Do you all have these problems as well? Now ive rambeled enought for tonight. I get carried away when I can see the keys!Every one , stay possitive remember to smile, and i am always here if some  one needs to dump some worry.Carring you all in my heart thru the day, Cath.

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