Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 I found out what is causing my bell's palsy. I have a swollen brain. Otherwise my mri is ok. No physical findings just the pressure. He has no idea why I have this but in my own research have found this to be part of neurosarc. He called it psuedotumor cerebri. He thinks it is related to neurosarc but I have to go through all kinds of blood work etc. and then he's not sure how to treat it. One suggested treatment is water pills but I have tried 3 different kinds in the past for retention and they have not worked. We're in "wait and see" mode for right now. A swollen brain is serious-- if it is because of fluid on the brain, it could be hydrocephalous. (Water on the brain.) However with the sarc history, this is a sign of encephalitis or menigitis. It is imperative that he order a spinal tap to see if you have an infection going on. Wait and see is so very dangerous. You could start having seizures, or be infecting others if you have a form of infectious meningitis. Water pills may bring down some swelling, temporarily, but it will also deplete the electroylytes in your system, and end up adding more problems to the picture. What the hell is your neuro thinking. I'd be finding another one fast. Here is a site for Epilepsy and sarcoidosis. Print out this article and take it into him!!!!!!!!! http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 Jodi My first incident with sarc (but they didn't know at the time) was hydrocephaelus. Have your family/coworkers/friends keep an eye on you. I got pretty strange the first time my pressure built up. I tried to put my pants leg on my arm so I could go to work. I was found in the floor after missing a few days at work. I ended up with a CVP shunt. Don't mean to scare you just wanted to relay what happened to me so people can keep an eye on you. grannylunatic@... Yahoo! oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 Tracie, that's a much more helpful answer than mine. Thank God you're here to watch our backs. Ramblin' Rose Moderator From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: went to doc todayDate: Thu, 31 May 2007 01:05:46 EDT In a message dated 5/30/07 5:46:58 PM Pacific Daylight Time, stopsarcoidosis (AT) hotmail (DOT) com writes: I found out what is causing my bell's palsy. I have a swollen brain. Otherwise my mri is ok. No physical findings just the pressure. He has no idea why I have this but in my own research have found this to be part of neurosarc. He called it psuedotumor cerebri. He thinks it is related to neurosarc but I have to go through all kinds of blood work etc. and then he's not sure how to treat it. One suggested treatment is water pills but I have tried 3 different kinds in the past for retention and they have not worked. We're in "wait and see" mode for right now. A swollen brain is serious-- if it is because of fluid on the brain, it could be hydrocephalous. (Water on the brain.) However with the sarc history, this is a sign of encephalitis or menigitis. It is imperative that he order a spinal tap to see if you have an infection going on. Wait and see is so very dangerous. You could start having seizures, or be infecting others if you have a form of infectious meningitis. Water pills may bring down some swelling, temporarily, but it will also deplete the electroylytes in your system, and end up adding more problems to the picture. What the hell is your neuro thinking. I'd be finding another one fast. Here is a site for Epilepsy and sarcoidosis. Print out this article and take it into him!!!!!!!!!http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html**************************************See what's free at http://www.aol.com. PC Magazine’s 2007 editors’ choice for best Web mail—award-winning Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2007 Report Share Posted May 31, 2007 I was just talking to my husband about it and told him to keep an eye on me. I think one of the biggest problems I am having is personality changes. I don't know if it's related to the swelling or just general symptom. It's worse than mood swings. Some days I can't stand to be around people at all not even family. I get mean and argue things that I know are wrong then deny that I argued. (all the while I don't remember a thing) There are also times when it hurts to be in a conversation. If someone is talking to me I can't comprehend what is being said and it will give me a headache. I get so frustrated and have to walk away from people. Of course they don't understand and frankly neither do I. I'm going to push the dr. to look into this a little more. Thanks for your help! Quote Link to comment Share on other sites More sharing options...
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