Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 > I have just found this group and have been reading the very > informative posts. I live in the Raleigh NC area, I am 53 yrs. old > and took an early retirement on Jan. 15. I don't like to say I > retired on disability, so I say I took an early retirement. It is > comforting to find others experiencing the same problems that I do. > Now that I have a lot of time to sit at my computer, I will catch up > on as many of the old posts as I can and join the discussion when I > have something to add. Thank you. > > Welcome ! My name is Ruth Warren, and I also live in the Raleigh area (North Raleigh). I am 42, have CMT, one of the type 2s (unknown subtype). CMT has been diagnosed in my family since the 1940s, so there has never been any mystery with me as to what I have or where it came from. Not with over 50 years of documented medical family history! I have 3 daughters, 13,12 and 10. The 10-yr-old has been diagnosed with CMT. She was the MDA Eastern NC Goodwill Ambassador last year. I use the MDA clinic at Duke to manage the CMT medical needs for myself and my daughter. Where do you live in the Raleigh area? Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Hi , I am 54 and took early retirement to,welcome to the group. Sam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2001 Report Share Posted January 31, 2001 Welcome to the group. I hope you find things to make your retirement enjoyable. Yes, this is a very informative group. They have helped me greatly. Feel free to join in and post. ----- Original Message ----- From: <stgrant@...> < > Sent: Wednesday, January 31, 2001 9:45 AM Subject: [] Introducing myself > I have just found this group and have been reading the very > informative posts. I live in the Raleigh NC area, I am 53 yrs. old > and took an early retirement on Jan. 15. I don't like to say I > retired on disability, so I say I took an early retirement. It is > comforting to find others experiencing the same problems that I do. > Now that I have a lot of time to sit at my computer, I will catch up > on as many of the old posts as I can and join the discussion when I > have something to add. Thank you. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 In a message dated 3/6/2001 3:22:22 PM Eastern Standard Time, kittiekit90049@... writes: << I really love this group and all the sharing everyone does. I'm glad this group is here. I tried another group but no one ever said anything >> Hi Kit I'm , welcome, you will sure learn a lot here. Take care of those feet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 -----Original Message----- From: kittiekit90049@... <kittiekit90049@...> < > Date: Tuesday, March 06, 2001 2:10 PM Subject: [] introducing myself >I have been on for a few weeks and would like to introduce >myself. My name is Kit. >>>>>>>>>Hi Kit, welcome to our group. Have you checked out our links/bookmarks and archives yet? Lots of information there, ~>Becky M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 It`s good to see people with a good outlook on there life with cmt. --- kittiekit90049@... wrote: > I have been on for a few weeks and would like > to introduce > myself. My name is Kit (actually a family nickname). > I live in So. > California and work at a large, hectic brokerage > house. I'm on my feet > alot and at the end of the day (which is early for > me due to the > market closing) they are sometimes hurting me, but > as for turning that > into something positive, my partner gives them a > good massage anytime > I need it. I am 36 and as for fun experiences I sure > have alot of > them, I also travel when I can and have seen most of > the 7 wonders of > the world - sore feet and all! But what thrills! I > refuse to let my > sore feet stop me from anything! I guess the way > I look at it is my > sore feet are just 'nags' lol of course bubble bath > helps too. > > I really love this group and all the sharing > everyone does. I'm glad > this group is here. I tried another group but no one > ever said > anything! > > Kit > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Corrie!!! My name is Amy and my baby's name is Max too! He is 11 months old. He too had some ridgeing along the left coronal side but it turned out that his sutures are open. You're right...what a relief. I would like to see a picture of your Max. Where is his flat spot - back of head or side? Does he have any bossing of the forehead? I am so happy for you that you had a good doctor and were able to catch it early as to avoid any severe flattening. Good for you. Good for Max - HA! sounds funny to hear of another Max...I haven't met one yet. I am in NY (Long Island) - so glad that you joined. How long has your Max been in his band? Amy (Max's mom STARband 2/19) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Corrie, I have AOL - my address is marcisch@... We do have regular chats on Tuesday evening. Unfortunately the last two weeks the chat room for has been down and we have been unable to get together that way :-( Hopefully the room will be up next Tuesday and if it is I am always there from 9:00 PM CST until 10:00 or 10:30 PM CST. There are some people who stay on later than that and I think some people come earlier. We usually have a small gathering around 9:00 PM CST. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 HI Corrie- I have aol bbbhand@.... My son is 3 almost 4months now and we are just starting the process he gets his DO band on Monday and I am so nervous. Welcome to the group-it has been a great support and educational lesson for me. Good Luck with Max-everyone keeps telling me we are so lucky we have caught it early. Did your ortho or neuro predict how long he would be in the band? How about since our boys are so young-how do we prevent this reoccurring when their bands come off? Since their heads still continue to grow and form at such a fast rate I worry that in 9 months we will be down the same rod. Just curios-anyone else if you have insight on this I would love to hear it. Fell free to email me personally maybe we can IM sometime. Beck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 I just wanted to say hello. i replied to a few mwssages earlier but didn't really introduce myself. I'm Corrie and my 4 month old son is Max. He got his helmet last Friday. We are from New Bedford Massachusetts. Anyone From around here? Max doesn't mind the helmet during the day but we are having problems getting him through the night with it. His head isn't really all that misshapen the nuerosurgeon just wanted to prevent further flattening. We were told at first the sutures were probably closed and were expecting surgery so this is a big relief. He had a lot of ridging on his coronal sutures, but it is diminishing as his head grows.I just wanted to say hello and let you know how nice it is to have people to talk to about this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hello, Welcome to the group. I am also from Massachusetts (clinton). We are going into Boston today to pick up na's helmet. We also were thinking that Bri was going to need surgery but to our relief her sutures are not fused. It is nice to hear from some local families as we have never even seen a child in a helmet or DOC Band until we went for Bri's casting. Have you noticed the same thing? Let me know and good luck with the sleeping. I'll update everyone later as to how bri did on her fitting. Thanks, April > I just wanted to say hello. i replied to a few mwssages earlier but > didn't really introduce myself. I'm Corrie and my 4 month old son is > Max. He got his helmet last Friday. We are from New Bedford > Massachusetts. Anyone From around here? Max doesn't mind the helmet > during the day but we are having problems getting him through the > night with it. His head isn't really all that misshapen the > nuerosurgeon just wanted to prevent further flattening. We were told > at first the sutures were probably closed and were expecting surgery > so this is a big relief. He had a lot of ridging on his coronal > sutures, but it is diminishing as his head grows.I just wanted to say > hello and let you know how nice it is to have people to talk to about > this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 i I am Kaycee, Mom to Maggie. Maggie was almost 1 when she got her band (mild to moderate) in 4 months she looks great. I am originally from Springfield, MA and travel to Newburyport almost monthly to visit friends. Welcome. Kaycee in albany, NY > I just wanted to say hello. i replied to a few mwssages earlier but > didn't really introduce myself. I'm Corrie and my 4 month old son is > Max. He got his helmet last Friday. We are from New Bedford > Massachusetts. Anyone From around here? Max doesn't mind the helmet > during the day but we are having problems getting him through the > night with it. His head isn't really all that misshapen the > nuerosurgeon just wanted to prevent further flattening. We were told > at first the sutures were probably closed and were expecting surgery > so this is a big relief. He had a lot of ridging on his coronal > sutures, but it is diminishing as his head grows.I just wanted to say > hello and let you know how nice it is to have people to talk to about > this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2001 Report Share Posted March 22, 2001 Hi Corrie (?), and welcome to the group! Don't worry about Max's adjustment period at night, you are in good company here. Most babies adjust fine, but we always have a handful here who take a couple of weeks! Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support... ----- Original Message ----- From: corrie43@... Plagiocephaly Sent: Thursday, March 22, 2001 5:44 AM Subject: Introducing myself I just wanted to say hello. i replied to a few mwssages earlier but didn't really introduce myself. I'm Corrie and my 4 month old son is Max. He got his helmet last Friday. We are from New Bedford Massachusetts. Anyone From around here? Max doesn't mind the helmet during the day but we are having problems getting him through the night with it. His head isn't really all that misshapen the nuerosurgeon just wanted to prevent further flattening. We were told at first the sutures were probably closed and were expecting surgery so this is a big relief. He had a lot of ridging on his coronal sutures, but it is diminishing as his head grows.I just wanted to say hello and let you know how nice it is to have people to talk to about this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2004 Report Share Posted October 31, 2004 > > Hello everyone! > > My name is , I'm an asthmatic of 14 years, steroid dependant for > five years running. I've been disabled (on social security) for the last > three years. I'm a mom of 2 children and I live in Haverhill, MA. (About > an hour north of Boston) > > My current daily meds are prednisone, singulair, advair and nexium, and I > also receive 60mg kenelog injections every two weeks. I have some PRN meds > for migraines or a very seldom anxiety attack. As you know, an anxiety > attack can and most likely WILL lead to an asthma attack! > > I see a specialist in Boston for my asthma. He's the head of the Center for > Chest Diseases at Brigham & Women's Hospital. I owe him a ton, and we're > both patiently awaiting information to see if my insurance company will > listen to his pleas and let me start Xolair treatments. > > I've learned SO MUCH from my doctor about asthma, how to handle and treat my > flare ups, how to see them coming and what my limitations are. I've managed > to cut my yearly hospital stay total from 6-12 down to about 3 or 4. The > last time I was admitted was in July and I was in for just five days this > time. Before that, I was in for a longer stay at the end of > January/beginning of February. > > My attacks MAINLY stem from allergies, but I'm prone to exercise and stress > induced attacks as well. I'm hoping that the Xolair will cut down on my > allergy related attacks and therefor make me less prone to the other types. > It seems right now that my lungs are in a constant state of inflammation > making every attack a bad attack. > > I do everything I'm supposed to do. By staying in a controlled environment > most of the time because I don't work, it's easier for me to keep track of > my peak flow several times per day and not worry about a supervisor at work > getting angry because I need a neb treatment! > > I'm lucky to have a fantastic support system in my family, friends and > doctors (specialists as well as my primary care) and I have a positive > attitude about my day to day life. > > I'm looking forward to hearing about the changes Xolair has made for some of > you, and hoping to see many of my questions addressed just by reading the > posts! > > Breath easy everyone and have a great rest of the weekend! > > Love and Hugs ~ , Welcome to the group Go back into the message archives and you will find a wealth of information about how most of us are doing on Xolair. I have been on it just over a year now and have reduced my need for Prednisone. I only take it during flare ups and lately, that has been not very often We are a friendly bunch who really stick together. You sound like you have a great doctor. Trust him! What you read here is GREAT, however we are NOT medical specialists, just asthma sufferers like yourself. I hope you get better soon Doug Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2004 Report Share Posted November 1, 2004 Thanks Doug! I appreciate the heads' up. I'll have to do some poking around tomorrow when I get home from yet another doc appointment. If it's not one thing, it's another. Lucky me had some biopsies a couple weeks ago and I'm to find out the results tomorrow. I do have a fantastic asthma doc. He's never treated me like a question I have is stupid and has REALLY gone above and beyond to educate me as well as treat me. Now when I have appointments, everything is in medical terms, he doesn't talk down to me a bit, because he KNOWS that I understand what he's saying. So I think it's even more to my benefit to be a part of this group and go through the archives. If something seems to make sense or stand out, I can toss it at him and see what he thinks! I've had a great day, possibly in part from the weather, dry and in the 60's ... sunny all day. Hope some, if not all of you had a similar one! Love and Hugs ~ -------Original Message------- From: Doug Date: 10/31/04 07:59:37 Subject: [ ] Re: Introducing myself , Welcome to the group Go back into the message archives and you will find a wealth of information about how most of us are doing on Xolair. I have been on it just over a year now and have reduced my need for Prednisone. I only take it during flare ups and lately, that has been not very often We are a friendly bunch who really stick together. You sound like you have a great doctor. Trust him! What you read here is GREAT, however we are NOT medical specialists, just asthma sufferers like yourself. I hope you get better soon Doug Group founder Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 hi jennifer. welcome! i sure hope your insurance company approves the xolair. actually, from what i've heard, most insurance companies are pretty good with it. you sound like a perfect candidate. i've heard very good things about Brigham & Women's Hospital. i used to live outside providence, and my sister lives in newton, MA, so i'm still somewhat in the new england loop...and i miss it!!!! i started xolair in january 2004. for me, xolair has helped me more than i thought it would. i've been able to reduce my inhaled steroids (so i'm only on advair 500 - plus all the other meds), return to exercising and in the spring/summer i now go mountain biking! (well, as mountain-y as long island can be). i've lost about 30 pounds in the process!!!! my ENT is also convinced xolair has done wonders for my sinus disease. since starting xolair in january, this is only my third sinus infection - i used to have at least one round of anti-biotics a month for sinus infections/resp infections/bronchitus. good luck! heather > > Hello everyone! > > My name is , I'm an asthmatic of 14 years, steroid dependant for > five years running. I've been disabled (on social security) for the last > three years. I'm a mom of 2 children and I live in Haverhill, MA. (About > an hour north of Boston) > > My current daily meds are prednisone, singulair, advair and nexium, and I > also receive 60mg kenelog injections every two weeks. I have some PRN meds > for migraines or a very seldom anxiety attack. As you know, an anxiety > attack can and most likely WILL lead to an asthma attack! > > I see a specialist in Boston for my asthma. He's the head of the Center for > Chest Diseases at Brigham & Women's Hospital. I owe him a ton, and we're > both patiently awaiting information to see if my insurance company will > listen to his pleas and let me start Xolair treatments. > > I've learned SO MUCH from my doctor about asthma, how to handle and treat my > flare ups, how to see them coming and what my limitations are. I've managed > to cut my yearly hospital stay total from 6-12 down to about 3 or 4. The > last time I was admitted was in July and I was in for just five days this > time. Before that, I was in for a longer stay at the end of > January/beginning of February. > > My attacks MAINLY stem from allergies, but I'm prone to exercise and stress > induced attacks as well. I'm hoping that the Xolair will cut down on my > allergy related attacks and therefor make me less prone to the other types. > It seems right now that my lungs are in a constant state of inflammation > making every attack a bad attack. > > I do everything I'm supposed to do. By staying in a controlled environment > most of the time because I don't work, it's easier for me to keep track of > my peak flow several times per day and not worry about a supervisor at work > getting angry because I need a neb treatment! > > I'm lucky to have a fantastic support system in my family, friends and > doctors (specialists as well as my primary care) and I have a positive > attitude about my day to day life. > > I'm looking forward to hearing about the changes Xolair has made for some of > you, and hoping to see many of my questions addressed just by reading the > posts! > > Breath easy everyone and have a great rest of the weekend! > > Love and Hugs ~ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 Thanks . I do have an excellent Doc, and the hospital is really great. I've been sent down to the emergency room from my doc's office before and I was treated exceptionally well. Glad to hear that Xolair is working so well for you. I'm hoping it can do even half as well for me! I can't wait to lose more weight. I maxed out at 289 a few years ago, and when I switched from prednisone to kenelog, I dropped down to 185. 2 Hospital stays with mega doses of IV steroids and being back on prednisone bumped me back up to about 205 now. My doc is impressed that I haven't gained more. I really hope I have the opportunity to lose even more once I can wean off steroids completely. Best of luck! Love and Hugs ~ -------Original Message------- From: heather Date: 11/02/04 07:44:18 Subject: [ ] Re: Introducing myself hi jennifer. welcome! i sure hope your insurance company approves the xolair. actually, from what i've heard, most insurance companies are pretty good with it. you sound like a perfect candidate. i've heard very good things about Brigham & Women's Hospital. i used to live outside providence, and my sister lives in newton, MA, so i'm still somewhat in the new england loop...and i miss it!!!! i started xolair in january 2004. for me, xolair has helped me more than i thought it would. i've been able to reduce my inhaled steroids (so i'm only on advair 500 - plus all the other meds), return to exercising and in the spring/summer i now go mountain biking! (well, as mountain-y as long island can be). i've lost about 30 pounds in the process!!!! my ENT is also convinced xolair has done wonders for my sinus disease. since starting xolair in january, this is only my third sinus infection - i used to have at least one round of anti-biotics a month for sinus infections/resp infections/bronchitus. good luck! heather Quote Link to comment Share on other sites More sharing options...
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