Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 I would like to see the answers to this posted to the group, please. I am also worried about this. Thanks! Alice (no subject) Hi all, i have many questions regarding Chiari and my children. My NSg says that the chance of passing this on to my kds is very very rare! Not to worry about it. I read somewhere on here today that it is a 1 in 10 chance?? I also saw a genticist (unsure of the spelling). He to said this is not genetic. I am very worried about this..obviously so. Any response is appreciated. Thanks, Missy Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 From what I have learned the chances of passing Chiari are around 12%......and it really varies. We have families here where only one member has it and others where all the members have it.....so the 12% is relative I guess. I think anyone with Chiari needs to watch their kids and warn their siblings and parents.....I will never confirm this but I suspect my mom has chiari and maybe the BI and my aunt that died in 1991, 2 months after being diagnosed with MS, probably had BI. My kids are chiari and BI free so far but I plan to keep my eyes open just in case. Hugs Alba (no subject) Hi all, i have many questions regarding Chiari and my children. My NSg says that the chance of passing this on to my kds is very very rare! Not to worry about it. I read somewhere on here today that it is a 1 in 10 chance?? I also saw a genticist (unsure of the spelling). He to said this is not genetic. I am very worried about this..obviously so. Any response is appreciated. Thanks, Missy Help section: http://www.yahoogroups.com/help/ NOTE: NCC refers to posts with No Chiari Content To Unsubscribe Yourself: chiari-unsubscribe WACMA Home: Http://www.wacma.com WACMA Online Group: http://groups.yahoo.com/group/chiari/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2002 Report Share Posted July 14, 2002 THIS IS GREAT!! THANKS FOR SHARING! HUGS, MARCY (no subject) I hope everyone like this it seems to fit what has been going on at least a little bit..love to all Too often we don't realizewhat we have until it's gone.Too often we wait too late to say"I'm sorry - I was wrong."Sometimes it seems we hurt the oneswe hold dearest to our hearts.And we allow foolish thingsto tear our lives apart.Far too many times we letunimportant things into our minds.And then it's usually too lateto see what made us blind.So be sure that you let people knowhow much they mean to you.Take that time to say the wordsbefore your time is through.Be sure that you appreciateeverything you've got.And be thankful for the Little things in life...that mean a lot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 Carolyn, I have been told it usually takes a few months of daily estrace to see results, then can be tapered back to maintenance levels of 1-2x/week. The steroid ointments really shouldn't be used more than 2-4 weeks, once a day - then tapered back to 1-3x/week. That's what I've heard from a combination of doctors and other women. I have been using the estrace for 3 weeks and feel like I might be seeing some teeny-tiny bits of results, but that may all be in my head, just hoping so much that it's working and imagining that I'm better than I really am. I should take pictures to document so I have some reality to deal with. =) Melinda Need a break? Find your escape route with Live Search Maps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 thanks Melinda, do you use the steroid cream too? CarolSee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2007 Report Share Posted April 7, 2007 Carol, I use steroid OINTMENT - I heard from many people that it's better than the cream. So I use clobetasol propitionate ointment. Melinda Download Messenger. Join the i’m Initiative. Help make a difference today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 hi everyone i haven't been here for quite some time. i joined the group and loved it, especially the kindness of everyone. however, i found it was making me feel a little depressed. i was so happy to read about all the things i had questions about, but with it also came the reality. thing is, i thought i was dealing with it very well. i guess that was the biggest shock! i was in denial but knew all the right things to say to fool myself and others. anyway, i am in a better place now regarding that. i've done some declining since last here. my ox sats drop rapidly to low 70's as soon as i stand or walk. i am on 3l sitting and 4-5 when standing. as you know, it drops and the heart pounds away. presently, i am on 10 mg. prednisone, revatio 3x day, and metformin. oh yeah, i developed pulmonary hypertension and diabetes from the prednisone. but, i lost 20 lbs!! yay..right? well, you can't tell of course having the prednisone bulge! my cough started to get alot worse and i took an antibiotic for a week and my pred. was upped to 20 for a week. it improved, but about three days later, cough came back. now i need to up it again back to 20 for 2 weeks. i didn't contact my dr. this time because i know that's what he'd say. i get discouraged because my mind feels normal and i want to do more to help myself. thing is, basically i sit here at the computer or nap. not much socialization but i am thankful to be alive and every day is a gift. i was in rehab but had to stop because getting showered and out three times a week was just too much. does anyone else find showering such a tedious chore? i've actually resolved myself to being smelly! always use to be very clean..now i let a day or two go by, always telling myself..tomorrow. and i hate watching my husband do MY housework! i remember well hating housework..until i could no longer do it..now i miss it and find myself resenting him for it. i think caregivers have it rough, but being the one being tended to is harder, don't you think? well, i just wanted to say hi and give a little update. hopefully i can come back to the group and participate. oh, please..someone tell me how to get to the place where i can stop all of these inbox messages!! i have over 555! i can't find how to get them off. any help greatly appreciated so i can just read things once and not multiple times. have a great day e1 and always remember to tell those you love that you do! judybrown63, IPF, PULM> HYPER, Diabetes2 SC, diag: 4/07 Quote Link to comment Share on other sites More sharing options...
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