Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 is IC interstitial cystitus? i am having some testing done in a week and they are thinking i have IC...what kind of symptoms do you have w/ this? anne new to this group Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 is IC interstitial cystitus? i am having some testing done in a week and they are thinking i have IC...what kind of symptoms do you have w/ this? anne new to this group Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 is IC interstitial cystitus? i am having some testing done in a week and they are thinking i have IC...what kind of symptoms do you have w/ this? anne new to this group Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Fi~ Welcome to the group. This group is very good and caring. It's nice to talk to people who know what you are going through. Feel free to ask anything and someone most likely will know the answer. Take care! ~ fwhiteth fwhiteth@...> wrote: Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Fi~ Welcome to the group. This group is very good and caring. It's nice to talk to people who know what you are going through. Feel free to ask anything and someone most likely will know the answer. Take care! ~ fwhiteth fwhiteth@...> wrote: Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Fi~ Welcome to the group. This group is very good and caring. It's nice to talk to people who know what you are going through. Feel free to ask anything and someone most likely will know the answer. Take care! ~ fwhiteth fwhiteth@...> wrote: Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi fwhiteth, Welcome to the group. Sorry you have so much going on with your health. I have the same conditions(IC,FM & IBS) and symptoms of CFS..Do you have headaches/migranes too? I have them and do have trouble with Multiple Sensitivities now and then. Many others here can help you with alternative treatments for fibro. I know for IC..I've read drinking marshmellow root tea helps. I also belong to an online support group for IC and if you like email me and I'll give you that info..I'm currently on medications for most of my problems but am interested in hearing results from others with different treatments. Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi ===== Interstitial Cystitis Awareness Fibromyalgia Awareness Open Records Supporter UNITED WE STAND! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi fwhiteth, Welcome to the group. Sorry you have so much going on with your health. I have the same conditions(IC,FM & IBS) and symptoms of CFS..Do you have headaches/migranes too? I have them and do have trouble with Multiple Sensitivities now and then. Many others here can help you with alternative treatments for fibro. I know for IC..I've read drinking marshmellow root tea helps. I also belong to an online support group for IC and if you like email me and I'll give you that info..I'm currently on medications for most of my problems but am interested in hearing results from others with different treatments. Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi ===== Interstitial Cystitis Awareness Fibromyalgia Awareness Open Records Supporter UNITED WE STAND! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi fwhiteth, Welcome to the group. Sorry you have so much going on with your health. I have the same conditions(IC,FM & IBS) and symptoms of CFS..Do you have headaches/migranes too? I have them and do have trouble with Multiple Sensitivities now and then. Many others here can help you with alternative treatments for fibro. I know for IC..I've read drinking marshmellow root tea helps. I also belong to an online support group for IC and if you like email me and I'll give you that info..I'm currently on medications for most of my problems but am interested in hearing results from others with different treatments. Hi I have IC,FM,IBS & possibly CFS. I am looking into alternative treatments. I live in the UK. Love Fi ===== Interstitial Cystitis Awareness Fibromyalgia Awareness Open Records Supporter UNITED WE STAND! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 ! This is a coincidence. It's me, Lenora, and (also 6) has developed asthma this past year, too. Bummer! I am also a bit freaked out at a new diagnosis, but so far, he has been really fine. A little puff of Flovent morning and evening and he's good to go. Hope it remains this easy. Take care, Lenora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 Welcome We also attend the cf clinic at childrens in Mil. We love the docs there. Noah was dx at 1 1/2 weeks old in the nicu. he is now 2.5 yrs old. I only know of on family in my town that has a child with cf and she is in high school and last i heard she was doing good. I have meet her and her mother at the cf walk our school does. Who is your doc at mil? Ours is doc Bandla. Who is your dietition, we have Tammi and just love her, she has been so hopeful. mom to Breanna 10 wocf and Noah 2.5 wcf > Hello - I am new to this group but have been in others like this. My son is 6 years old and was diagnosised with CF at 5 weeks old.. He goes to Children's Hospital in Milwaukee WI. We have had only one hospitalization since dx. We have had several pneumonias but have always been able to keep him off IV's. > > Tonight was a trip to the local ER, with lots of SOB and wheezing, even after an nebulizer treatment. The diagnosis ----- ASTHMA. This is the first time we have been given this dx. Something new to add to the list of things to worry about. > > It is great that there is a list like this for parents to talk and share. There is no one else within miles of our small town with CF. Hope to get to know many of you soon. > > > mom to Willy w/cf and three other great kids w/o cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 Welcome We also attend the cf clinic at childrens in Mil. We love the docs there. Noah was dx at 1 1/2 weeks old in the nicu. he is now 2.5 yrs old. I only know of on family in my town that has a child with cf and she is in high school and last i heard she was doing good. I have meet her and her mother at the cf walk our school does. Who is your doc at mil? Ours is doc Bandla. Who is your dietition, we have Tammi and just love her, she has been so hopeful. mom to Breanna 10 wocf and Noah 2.5 wcf > Hello - I am new to this group but have been in others like this. My son is 6 years old and was diagnosised with CF at 5 weeks old.. He goes to Children's Hospital in Milwaukee WI. We have had only one hospitalization since dx. We have had several pneumonias but have always been able to keep him off IV's. > > Tonight was a trip to the local ER, with lots of SOB and wheezing, even after an nebulizer treatment. The diagnosis ----- ASTHMA. This is the first time we have been given this dx. Something new to add to the list of things to worry about. > > It is great that there is a list like this for parents to talk and share. There is no one else within miles of our small town with CF. Hope to get to know many of you soon. > > > mom to Willy w/cf and three other great kids w/o cf > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 Hi , welcome to this list! According to our local Harley son dealer our town is exactly 5,000 miles east of Milwaukee. And Dortmund, the city nearby has the second largest output of beer in the world, just behind Milwaukee. A few years ago I was in contact with Buxton (?), her son wcf must be nearly as old as Willy and she went to Milwaukee Children's too. Do you know her? I think she was from Sheboygan. Peace Torsten, dad of Fiona 5wcf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 Hi , welcome to this list! According to our local Harley son dealer our town is exactly 5,000 miles east of Milwaukee. And Dortmund, the city nearby has the second largest output of beer in the world, just behind Milwaukee. A few years ago I was in contact with Buxton (?), her son wcf must be nearly as old as Willy and she went to Milwaukee Children's too. Do you know her? I think she was from Sheboygan. Peace Torsten, dad of Fiona 5wcf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 , Welcome to the list. I find it a great resource and source of comfort. I hope you feel right at home here. hugs, C Mommy to Mick and Alli, 2 yo twins wcf --- Vogt willymom@...> wrote: > Hello - I am new to this group but have been in > others like this. My son is 6 years old and was > diagnosised with CF at 5 weeks old.. He goes to > Children's Hospital in Milwaukee WI. We have had > only one hospitalization since dx. We have had > several pneumonias but have always been able to keep > him off IV's. > > Tonight was a trip to the local ER, with lots of SOB > and wheezing, even after an nebulizer treatment. > The diagnosis ----- ASTHMA. This is the first time > we have been given this dx. Something new to add to > the list of things to worry about. > > It is great that there is a list like this for > parents to talk and share. There is no one else > within miles of our small town with CF. Hope to get > to know many of you soon. > > > mom to Willy w/cf and three other great kids w/o cf > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 In a message dated 6/21/2002 9:29:50 PM Central Standard Time, willymom@... writes: > Hello - I am new to this group but have been in others like this. My son is > 6 years old and was diagnosed with CF at 5 weeks old.. He goes to > Children's Hospital in Milwaukee WI. We have had only one hospitalization > since dx. We have had several pneumonias but have always been able to keep > him off IV's. > > Tonight was a trip to the local ER, with lots of SOB and wheezing, even > after an nebulizer treatment. The diagnosis ----- ASTHMA. This is the > first time we have been given this dx. Something new to add to the list of > things to worry about. > > It is great that there is a list like this for parents to talk and share. > There is no one else within miles of our small town with CF. Hope to get > to know many of you soon. > > > mom to Willy w/cf and three other great kids w/o cf , I know what you mean by adding more to you list to worry about. My oldest was first diagnosed with Hydrocephalus when she was a year old then when she was 6 she was diagnosed with CF. It is really hard when your kid is hit hard with to illness to deal with. It just doesn't seem fair. I have 3 girls and two of the three have CF. I also do not have anyone really close to where we live that has CF this group has helped me a lot. I hope you enjoy it has much has I do. I am in Iowa not to far from you. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 I missed the name at willymom@..., but think that this was . However, my point is that it is so difficult to deal with cf, much less cf and hydrocephalus that I think that this groups will just be the very best for most parents of cf kids, young or adult. If I may say so, I think that we are terrific--collectively and individually! Welcome aboard! n who has cf, one adult child wcf, two who are carriers, and who had hydrocephalus of prematurity as an infant--fine soon afterward--they did not even have shunts then! Good luck to both who posted and to your families and kids as well, M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 In a message dated 6/23/2002 5:00:23 PM Central Standard Time, Mcesana@... writes: > I missed the name at willymom@..., but think that this was > . However, my point is that it is so difficult to deal with cf, much > less cf and hydrocephalus that I think that this groups will just be the > very best for most parents of cf kids, young or adult. If I may say so, I > think > that we are terrific--collectively and individually! Welcome aboard! > n who has cf, one adult child wcf, two who are carriers, and who had > hydrocephalus of prematurity as an infant--fine soon afterward--they did > not even have shunts then! Good luck to both who posted and to your > families and kids as well, M. n, It was me Deb A from Iowa who posted about the hydrocephelus. My oldest that has CF also has a shunt we found out about the hydrocephelus before we found out about the CF. I was just telling who found out her daughter had asthma on top of the CF how hard it is for a child to deal with two illness. But my is a really tough kid. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 Welcome Margie ! Check out this site. It has lots of info for you !!! www.top5plus.5.com I know that I found it useful when I first joined about one year ago. Also stay on a fow fat diet, drink lots of water and check about taking digestive enzymes. Have you had a CT scan yet ? Check out the site if you can before your doctors visit, it will get you started. Take care, Lily from Ohio New to this group Hi I am new to this group and have alot of questions already... Margie AKA Gran HUnny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2002 Report Share Posted October 13, 2002 Welcome Margie ! Check out this site. It has lots of info for you !!! www.top5plus.5.com I know that I found it useful when I first joined about one year ago. Also stay on a fow fat diet, drink lots of water and check about taking digestive enzymes. Have you had a CT scan yet ? Check out the site if you can before your doctors visit, it will get you started. Take care, Lily from Ohio New to this group Hi I am new to this group and have alot of questions already... Margie AKA Gran HUnny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 > Welcome Margie ! > Check out this site. It has lots of info for you !!! > www.top5plus.5.com > I know that I found it useful when I first joined about one year ago. Also stay on a fow fat diet, drink lots of water and check about taking digestive enzymes. Have you had a CT scan yet ? Check out the site if you can before your doctors visit, it will get you started. > Take care, > Lily from Ohio > I have not had a Ct Scan yet. Because of heart problems I was put on a heart healthy diet about a week and a half ago which is no cholesterol, low fat and no salt diet. Also I now had a 3rd attack early Saturday morning and had to go back to the ER and that doctor treated me like I just wanted like some of you have posted here, narcotics but did give me a prescription for 12 of them. Right now I cannot even get in to see a GI Doctor until Nov. 5th and this is getting worse and worse. So I went in to get the referral from my primary doctor and left a message asking what they expected me to do until then since now even eating is making this worse. The pain is becoming unbearable and I am allergic to about every pain med there is and I don't know what else to do anymore. I am already on disablity since I am also bipolar(manic depressive). I wish they would just admit me and take care of this because I am tired of running back and forth to the ER and they are getting angry with me for going there so much already. Any suggestions? Margie I now have all my information in the data base as well I live in Tampa, Florida. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 again i will remind people that in Maine you have a patient bill of rights which includes your right to be pain free. Check it out in your state. Also doctor's hate it when you remind them of their hipocratic oath...DO NO HARM. There are alot of synthetic pain killers. your just gonna have to keep trying but this should be done under medical supervision so they can react to any reaction you may have. also are you keeping your self hydrated. my daughter does not like to drink or eat when pain is at its worst, also dr says nothing by mouth including water because it starts her whole digestive process. she is always admitted once her pain level has hit about 5 on a scale to 10. She is also always admitted to a private room because just smelling food starts digestion. i pray for every one that your days will be pain free patty bangor, me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 again i will remind people that in Maine you have a patient bill of rights which includes your right to be pain free. Check it out in your state. Also doctor's hate it when you remind them of their hipocratic oath...DO NO HARM. There are alot of synthetic pain killers. your just gonna have to keep trying but this should be done under medical supervision so they can react to any reaction you may have. also are you keeping your self hydrated. my daughter does not like to drink or eat when pain is at its worst, also dr says nothing by mouth including water because it starts her whole digestive process. she is always admitted once her pain level has hit about 5 on a scale to 10. She is also always admitted to a private room because just smelling food starts digestion. i pray for every one that your days will be pain free patty bangor, me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 again i will remind people that in Maine you have a patient bill of rights which includes your right to be pain free. Check it out in your state. Also doctor's hate it when you remind them of their hipocratic oath...DO NO HARM. There are alot of synthetic pain killers. your just gonna have to keep trying but this should be done under medical supervision so they can react to any reaction you may have. also are you keeping your self hydrated. my daughter does not like to drink or eat when pain is at its worst, also dr says nothing by mouth including water because it starts her whole digestive process. she is always admitted once her pain level has hit about 5 on a scale to 10. She is also always admitted to a private room because just smelling food starts digestion. i pray for every one that your days will be pain free patty bangor, me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2002 Report Share Posted October 20, 2002 Patty, What a great doc you daughter must have. It sure is nice to be a private room when your in for an attack of Pancreatitis. I know what you mean about the smell of food making the whole digestive part start. I get very nauseated from the smell of food or drink, especially coffee, when I'm having an attack. I have to request a private room then sign my life away saying I'll pay the difference to get it. At the hospital I usually go to there is no problem getting on, because about 1/2 of all the rooms are private. the other hospital has only 4 private rooms on each floor and you almost have to be related to the hospital administrator to get one, so I usually don't go there for that reason. My husband wants me to get a private room, because he knows I need my rest and don't need allot of people parading in when I'm that sick. Even my gastro doc tries to feed me when I in the hospital. You would think they would know better than that, you need time for it to settle down. I do have more luck on the food issue and nothing by mouth from my PCP. That is at least one thing he does right. You are lucky also to have her admitted when her pain level is only a 5 out of a 10. I lucky to be admitted when my is a 8 or 9 out of a 10. I have been given a pain and nausea shot with pain that high and then sent home only to have it come back again. You are truly lucky to have good doctors in Maine. Take Care Louie in WV Re: Re: New to this group again i will remind people that in Maine you have a patient bill of rights which includes your right to be pain free. Check it out in your state. Also doctor's hate it when you remind them of their hipocratic oath...DO NO HARM. There are alot of synthetic pain killers. your just gonna have to keep trying but this should be done under medical supervision so they can react to any reaction you may have. also are you keeping your self hydrated. my daughter does not like to drink or eat when pain is at its worst, also dr says nothing by mouth including water because it starts her whole digestive process. she is always admitted once her pain level has hit about 5 on a scale to 10. She is also always admitted to a private room because just smelling food starts digestion. i pray for every one that your days will be pain free patty bangor, me Quote Link to comment Share on other sites More sharing options...
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