Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 << She says that she has not started on it. I just wondering how long the process is going to take. >> Hi, ! I seem to remember someone posting that Debbie is struggling with a patient backload of 50-some patients right now. She's probably going to have a little longer turnaround time for getting things FAXED to the insurance companies. She's really good about calling to let us know that she's sent the packet to the insurance so that you can start your calling campaign the following week to track its progress. She only has part-time help right now. I know that it's difficult to wait for all the paperwork and the insurance people. Can you do other little things for getting ready while you wait for the paperwork? (Pack your hospital bag, sort closets, drawers, stock your pantry and freezer for things you'll need to eat after surgery, etc.?) It sure helped me to do some " nesting " while I waited. Dee in MI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 << She says that she has not started on it. I just wondering how long the process is going to take. >> Hi, ! I seem to remember someone posting that Debbie is struggling with a patient backload of 50-some patients right now. She's probably going to have a little longer turnaround time for getting things FAXED to the insurance companies. She's really good about calling to let us know that she's sent the packet to the insurance so that you can start your calling campaign the following week to track its progress. She only has part-time help right now. I know that it's difficult to wait for all the paperwork and the insurance people. Can you do other little things for getting ready while you wait for the paperwork? (Pack your hospital bag, sort closets, drawers, stock your pantry and freezer for things you'll need to eat after surgery, etc.?) It sure helped me to do some " nesting " while I waited. Dee in MI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Hi! Newbabyhope is my screen name. I will be online tonight around 7pm EST. C ----Original Message Follows---- From: SKC6252@... Reply-To: MiniGastricBypassonelist To: MiniGastricBypassonelist Subject: (no subject) Date: Thu, 3 Feb 2000 16:33:55 EST From: SKC6252@... I would like to chat on-line with some of you that have already had the surgery. If anyone is interested I have aol instant messanger capabilities. Please e-mail me and we can set up a time to chat. Thanks. - Kansas City --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Hi I have had the Roux N Y Gastric By-pass on Dec 13 and I usually get on icq 7pp.m. and sometimes 9 a.m. I would like to chat Dee in Missouri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2000 Report Share Posted February 17, 2000 Kay, please let me know what day you are going to have the surgery. I would really love to come by and give you a visit. christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 I've heard of the pseudo pouch only recently. She had a VBG, though, originally. As to the body trying to normalize, yes, have heard of that frequently. The common channel will often stretch longer & wider to try to " reach " for the nutrition it has not been getting. We don't see it with the well supplemented people much, but with the ones done elsewhere more often. And the pouch stretching way, way out, yes. The body will try to right itself. Which is why we try to fool it with lots 'n lots of protein & water, so it thinks it is Rich Beyond Words with what it needs. Dr Carolyn could explain it better, but I know she has a " code id her dose " today, so may not be up to typing more than a few words. Thanks, www.vitalady.com https://secure.paypal.com/affil/pal=vitalady%40bigfoot.com (no subject) > hey there all of you........ > has anyone heard of or know why a person gets a suto pouch or an elongated > intestine and starts to gain their weight back......i have heard of this > happening......and was wondering about it....... > thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Blanche, Ralph, you and your family are all in my prayers. This is a very hard time for all of you. Yet you are correct that God will help all of you through this. Most importantly know that none of you are alone. No matter how hard things seem, you can always turn to others for acceptance, support and love. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Blanche, It sounds like you're doing all you can to honor your husband's wishes. It can be a very hard and painful thing to do. I hope you have lots of family and friends close by to you for support. Please know you're in my thoughts and prayers. Smiles and hugs, Diane (no subject) > To all > Ralph has ask for all med,s to be removed and has refused or spit them out > when given to him. > H e is total care!!!! > Has a living will. THE CHILDREN AND I HAVE GRANTED HIM HIS WISHES. > Will only use comfort care ordered by the Dr. > has had sds over 17 years . has had a heart patch on since april to keep his > heart > going. and has had the nurse remove his bowls as he has no muscles > no therpy works and he has had alot. > So with Gods help he will see us through . > Yesterday i said i would be back in a couple hours . told him i loved him > and he said now don,t cry it will only make it worst. > > > Wish all of you a good day Blanche > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 , Is your husband taking amantadine? My husband Rob oten complains that it makes him have chills and goose bunps. I believe it is a known side effect of the medication. I think that the illness itself can also cause problems with temperature regualtion. There are a few ways to contribute to research toward a better understanding and hopefully a cure for MSA. You can contribute to the Vanderbilt Autonomic Lab, to NORD (the National Organization for Rare Diseases, www.rarediseases.org) or to the Mayo Clinic. Here in Boston, MA, we are contributing to the Center for Autonomic and Peripheral Disorders at Beth Israel Deaconess Hospital. Our family has recently started a family foundation, and we are actively looking for the best way to further research in thei area. I will be glad to share whatever I find out. Welcome to the list, and I hope we can help you and your husband deal with this terrible illness. Carol & Rob, Lexington, MA > I just subscribed to the shy drager site and I am a relative " beginner " at > posting and receiving messages and culling thru to what I think are the > essentials. My husband was diagnosed with this monster of a disease approx 4 > years ago. -- He has been living at a Hospice Residence for the past 6 > months and is receiving excellent care. > The staff is caring and most attentive and not " exhausted " as I was.-- > Lately he has been getting the chills quite frequently..almost daily. The > caregivers wrap him in heated flannel blankets and tuck him in with sweet > words and a kiss. It helps tremendously but I am wondering if anyone else > has experience with the " chill afftect " and has knowledge of why it takes > place. Is it because the bodies thermostat is shutting down along with > everything else? Also, any suggestions for eliminating the chills? He does > not want medication that is going to make him groggy or less mentally > alert....he wants to live the life he has left with as much mental clariity > as possible. > > Is anyone aware of Research that is being done specifically on MSA. We may > contribute in the future to such a cause but want the money earmarked for MSA > Research. > > In anticipation of a response -- thanks---- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 , Is your husband taking amantadine? My husband Rob oten complains that it makes him have chills and goose bunps. I believe it is a known side effect of the medication. I think that the illness itself can also cause problems with temperature regualtion. There are a few ways to contribute to research toward a better understanding and hopefully a cure for MSA. You can contribute to the Vanderbilt Autonomic Lab, to NORD (the National Organization for Rare Diseases, www.rarediseases.org) or to the Mayo Clinic. Here in Boston, MA, we are contributing to the Center for Autonomic and Peripheral Disorders at Beth Israel Deaconess Hospital. Our family has recently started a family foundation, and we are actively looking for the best way to further research in thei area. I will be glad to share whatever I find out. Welcome to the list, and I hope we can help you and your husband deal with this terrible illness. Carol & Rob, Lexington, MA > I just subscribed to the shy drager site and I am a relative " beginner " at > posting and receiving messages and culling thru to what I think are the > essentials. My husband was diagnosed with this monster of a disease approx 4 > years ago. -- He has been living at a Hospice Residence for the past 6 > months and is receiving excellent care. > The staff is caring and most attentive and not " exhausted " as I was.-- > Lately he has been getting the chills quite frequently..almost daily. The > caregivers wrap him in heated flannel blankets and tuck him in with sweet > words and a kiss. It helps tremendously but I am wondering if anyone else > has experience with the " chill afftect " and has knowledge of why it takes > place. Is it because the bodies thermostat is shutting down along with > everything else? Also, any suggestions for eliminating the chills? He does > not want medication that is going to make him groggy or less mentally > alert....he wants to live the life he has left with as much mental clariity > as possible. > > Is anyone aware of Research that is being done specifically on MSA. We may > contribute in the future to such a cause but want the money earmarked for MSA > Research. > > In anticipation of a response -- thanks---- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 , Is your husband taking amantadine? My husband Rob oten complains that it makes him have chills and goose bunps. I believe it is a known side effect of the medication. I think that the illness itself can also cause problems with temperature regualtion. There are a few ways to contribute to research toward a better understanding and hopefully a cure for MSA. You can contribute to the Vanderbilt Autonomic Lab, to NORD (the National Organization for Rare Diseases, www.rarediseases.org) or to the Mayo Clinic. Here in Boston, MA, we are contributing to the Center for Autonomic and Peripheral Disorders at Beth Israel Deaconess Hospital. Our family has recently started a family foundation, and we are actively looking for the best way to further research in thei area. I will be glad to share whatever I find out. Welcome to the list, and I hope we can help you and your husband deal with this terrible illness. Carol & Rob, Lexington, MA > I just subscribed to the shy drager site and I am a relative " beginner " at > posting and receiving messages and culling thru to what I think are the > essentials. My husband was diagnosed with this monster of a disease approx 4 > years ago. -- He has been living at a Hospice Residence for the past 6 > months and is receiving excellent care. > The staff is caring and most attentive and not " exhausted " as I was.-- > Lately he has been getting the chills quite frequently..almost daily. The > caregivers wrap him in heated flannel blankets and tuck him in with sweet > words and a kiss. It helps tremendously but I am wondering if anyone else > has experience with the " chill afftect " and has knowledge of why it takes > place. Is it because the bodies thermostat is shutting down along with > everything else? Also, any suggestions for eliminating the chills? He does > not want medication that is going to make him groggy or less mentally > alert....he wants to live the life he has left with as much mental clariity > as possible. > > Is anyone aware of Research that is being done specifically on MSA. We may > contribute in the future to such a cause but want the money earmarked for MSA > Research. > > In anticipation of a response -- thanks---- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Greetings ! You wondered: > It helps tremendously but I am wondering if anyone else > has experience with the " chill afftect " and has knowledge > of why it takes place. Is it because the bodies thermostat > is shutting down along with everything else? Also, any > suggestions for eliminating the chills? Here I am sitting, after a very long couple of weeks of work ... pushed myself too hard, and I can tell. I am shivering up a storm. I get like this now when I get tired. Didn't used to have this happen. I just assume it is a thermostat problem. And treat it like getting too tired. Wrap up warmly and try to rest. Seems to help me. No scientific, but it helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 Greetings ! You wondered: > It helps tremendously but I am wondering if anyone else > has experience with the " chill afftect " and has knowledge > of why it takes place. Is it because the bodies thermostat > is shutting down along with everything else? Also, any > suggestions for eliminating the chills? Here I am sitting, after a very long couple of weeks of work ... pushed myself too hard, and I can tell. I am shivering up a storm. I get like this now when I get tired. Didn't used to have this happen. I just assume it is a thermostat problem. And treat it like getting too tired. Wrap up warmly and try to rest. Seems to help me. No scientific, but it helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 my father has shydrager and he barely gets around. His hands are stiff and his legs can barely take him. the doctor suggested that he mainly get around in his wheelchair, but he continues to try to walk. he does fall, but he won't give up. i'm glad he's not giving up. he speech is hard to understand. we also, have to add a thickening to all liquid drinks including water because he has periods of times when it all just comes back to the surface. this is a horrible disease and it gets hard to watch everyday as he gets weaker. just needed to share my feelings on today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 , Charlotte is cold all the time, but rarely shivers. However, when she is tired any standing is accompanied by an extreme case of shakes. I feel it is weakness. Keep on exercising. Take care, Bill and Charlotte ------------------------------------------ Fisher wrote: > Greetings ! > > You wondered: > > > It helps tremendously but I am wondering if anyone else > > has experience with the " chill afftect " and has knowledge > > of why it takes place. Is it because the bodies thermostat > > is shutting down along with everything else? Also, any > > suggestions for eliminating the chills? > > Here I am sitting, after a very long couple of weeks of work ... pushed > myself too hard, and I can tell. I am shivering up a storm. I get like > this now when I get tired. Didn't used to have this happen. > > I just assume it is a thermostat problem. And treat it like getting too > tired. Wrap up warmly and try to rest. Seems to help me. No scientific, > but it helps. > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 , Charlotte is cold all the time, but rarely shivers. However, when she is tired any standing is accompanied by an extreme case of shakes. I feel it is weakness. Keep on exercising. Take care, Bill and Charlotte ------------------------------------------ Fisher wrote: > Greetings ! > > You wondered: > > > It helps tremendously but I am wondering if anyone else > > has experience with the " chill afftect " and has knowledge > > of why it takes place. Is it because the bodies thermostat > > is shutting down along with everything else? Also, any > > suggestions for eliminating the chills? > > Here I am sitting, after a very long couple of weeks of work ... pushed > myself too hard, and I can tell. I am shivering up a storm. I get like > this now when I get tired. Didn't used to have this happen. > > I just assume it is a thermostat problem. And treat it like getting too > tired. Wrap up warmly and try to rest. Seems to help me. No scientific, > but it helps. > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 , Charlotte is cold all the time, but rarely shivers. However, when she is tired any standing is accompanied by an extreme case of shakes. I feel it is weakness. Keep on exercising. Take care, Bill and Charlotte ------------------------------------------ Fisher wrote: > Greetings ! > > You wondered: > > > It helps tremendously but I am wondering if anyone else > > has experience with the " chill afftect " and has knowledge > > of why it takes place. Is it because the bodies thermostat > > is shutting down along with everything else? Also, any > > suggestions for eliminating the chills? > > Here I am sitting, after a very long couple of weeks of work ... pushed > myself too hard, and I can tell. I am shivering up a storm. I get like > this now when I get tired. Didn't used to have this happen. > > I just assume it is a thermostat problem. And treat it like getting too > tired. Wrap up warmly and try to rest. Seems to help me. No scientific, > but it helps. > > Regards, > =jbf= > > B. Fisher > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Hi, I know how hard it is to watch a love one suffering with this hateful disease. My husband was diagnosed last year. Physical therapy is very important for MSA pts. It really helps him walk and move better. Feel free to privately email me anytime you feel you need to talk. Take care, Kathy Re: (no subject) my father has shydrager and he barely gets around. His hands are stiff and his legs can barely take him. the doctor suggested that he mainly get around in his wheelchair, but he continues to try to walk. he does fall, but he won't give up. i'm glad he's not giving up. he speech is hard to understand. we also, have to add a thickening to all liquid drinks including water because he has periods of times when it all just comes back to the surface. this is a horrible disease and it gets hard to watch everyday as he gets weaker. just needed to share my feelings on today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Hi, I know how hard it is to watch a love one suffering with this hateful disease. My husband was diagnosed last year. Physical therapy is very important for MSA pts. It really helps him walk and move better. Feel free to privately email me anytime you feel you need to talk. Take care, Kathy Re: (no subject) my father has shydrager and he barely gets around. His hands are stiff and his legs can barely take him. the doctor suggested that he mainly get around in his wheelchair, but he continues to try to walk. he does fall, but he won't give up. i'm glad he's not giving up. he speech is hard to understand. we also, have to add a thickening to all liquid drinks including water because he has periods of times when it all just comes back to the surface. this is a horrible disease and it gets hard to watch everyday as he gets weaker. just needed to share my feelings on today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2001 Report Share Posted February 12, 2001 Hi, I know how hard it is to watch a love one suffering with this hateful disease. My husband was diagnosed last year. Physical therapy is very important for MSA pts. It really helps him walk and move better. Feel free to privately email me anytime you feel you need to talk. Take care, Kathy Re: (no subject) my father has shydrager and he barely gets around. His hands are stiff and his legs can barely take him. the doctor suggested that he mainly get around in his wheelchair, but he continues to try to walk. he does fall, but he won't give up. i'm glad he's not giving up. he speech is hard to understand. we also, have to add a thickening to all liquid drinks including water because he has periods of times when it all just comes back to the surface. this is a horrible disease and it gets hard to watch everyday as he gets weaker. just needed to share my feelings on today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Oh, My Gosh, Cheryl!!! I did not realize that they are three years old already! And is up to 23 pounds? That is great. How is the new school going? 's hearing and speech? I miss hearing from you, but certainly understand how busy you are. (But I'll bet having at school a little bit has been a little bit of a relief - just so that you can spend more time with Jen and .) Fill us in when you have the chance! Jodi (no subject) > Hi Steve and Judith, > > I'm the triplet Mom of the group (and no saint, as Liz mentioned, that's for sure). I have 2 > boys and a girl, , and . is my RSS son. My kids just turned 3 > last month. 's 23 lbs., 32 " , is 45 lbs., and is 40 lbs. I know exactly > what you mean by the non-RSS kids running over the RSS kids. does have a feeding tube > that we rely on for nutrition, he's also on periactin. and we are regulars now at Dr. H's > office. We'll be seeing her March 30th (anyone else going on that date?). I'm sure we'll be > talking growth hormone at our next visit. We live in CT so NY isn't that far away. Anyway, > glad to have you on the list and I'll write more when I have more time. > > Cheryl > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Hi Cheryl, Glad to hear from you - just had to say a couple of things. > I'm the triplet Mom of the group (and no saint, as Liz mentioned, that's for sure).> Sorry, but speaking as a parent of twins, any parent of triplets who survives with his/her sanity intact automatically get the " Advance directly to Go, Collect $200 " free pass into sainthood ) >>I know exactly what you mean by the non-RSS kids running over the RSS kids.>> Yeah, that speed bump comment seems to have hit home with some folks, but does have a couple of ways of getting even that he thinks we don't notice lol >>we are regulars now at Dr. H's office. We'll be seeing her March 30th (anyone else going on that date?). I'm sure we'll be > talking growth hormone at our next visit.>> Good luck at Dr. H's, we understand the 'growth hormone' stage is a big one. >>We live in CT so NY isn't that far away. >> Where in CT? We're a few minutes from the Tappan Zee, so 95 and the Merritt aren't too far from us, maybe 15-20 mins to CT. > glad to have you on the list and I'll write more when I have more time.> Judith asked... with triplets, you mean you EVER have 'more time'??? Sainthood, indeed.......... take care, Steve ( & Judith) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 You can get your own lab results, either by requesting a copy when the labs are done or by going to the hospital or clinic & requesting them. then you run rhe results by your trusty cyber buddies for our humble opinions. That may help you ask the right questions of the doc. Rose (no subject) well its thursday i still have not heard anything from the Dr I called today and she said he is waiting for one more report to complete. I am going crazy. DO you think he will tell me over the phone or I have to go back then that is more waiting. Anybody else how long did you take to find results out. I just want to go into the streets and scream see I am not crazy depressed fatigued or any other scape goat Dx used to sho me away.My kidneys are killing me and has anyone felt like theri tongue is swollen i keep getting this feeling that i am having an allergic reaction(but not) and my tongue feels like it is swollen ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 YES IT DOES! You have my utmost sympathy! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 YES IT DOES! You have my utmost sympathy! Love, Jeri Quote Link to comment Share on other sites More sharing options...
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