Guest guest Posted May 8, 1999 Report Share Posted May 8, 1999 Hi! I am Kristie, and I live in Western Australia. I have 3 young sons. I haven't yet started the diet, I have to read up on it a bit more to figure out what I can and can't eat. I have a lot of trouble sticking to diets, so wish me luck. I think it is similar to giving up smoking, lol. I am about 15 - 20 Kgs over weight. (about 2 - 3 stone) I am quite tall, so I don't look obese, but I sure feel it. I don't have a lot of energy, I thought for a while there that I had Chronic Fatigure Syndrome, but I'm sure that isn't it after a lot of research. I am on anti-inflamatories, who knows what for, but they help with the aches and pains. Does this diet lower energy levels? Is there anything we can do about that? Thanks, Kristie. >I am Alison, I'm a mother of 2, ish but living in France. > >I have not yet started the Atkins diet, though it has been recommended >to me to help my hypothyroid and rising fasting glucose problems. I have >just recently found out about these and I am amxious to avoid >adult-onset diabetes. > >I am waiting for my book to arrive from Amazon but I have recently >realised that from what I'v read, my childhood preferences of meat, eggs >fish and a very little fruit/veg -no pasta, bread or potatoes seem very >similar to this diet. Unfortunately I have spent my adult life training >myself to like carbohydrates and have succeeeded to the point of being >almost addicted. > >Anyway, I hope to be able to contribute and gain support from this list. > >Alison > > > > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. >http://www.onelist.com >Join today! >------------------------------------------------------------------------ >We Can Work Together For A Better You > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Hi Kim I just started to day I don't have much time to work out either because we are rasing a drug baby that we adopted. But I need to lose weight and that what I am doing my husband lost 41 pound on it and I hope to lose a lot to. Let do it together I no we can do it. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Hi Yes I no I well like the people and I no with all of their help I well lose my weight I went to well it nice to have people to help you. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Kim let me put your fears to rest from my point of view and my uroligist he thinks this is fine i had surgury for another problem last friday that will be treated with 3 weeks of antibotics so my weight will almost stop comeing off he said but he told me not to stop the diet. Comeing from a speialist I find that incouraging. :)Sue 310/275/180 --- " D. " wrote: > > > > Hi! > > My name is Kim. I'm just starting out on the diet. > I've had much less > available time to work out lately, as my daughter > has recently been > diagnosed as mildly autistic. That takes a lot of > my time. She's doing > great, though. We're actively treating it, and we > caught it early, so her > chances of " recovery " are good. I also have > another daughter, and I'm > happily married. The pounds will go on if I don't > exercise, and before I > stopped, I had about 5-7 more to lose. I also love > carbs-so having just > started this this weekend, I'm doubtful I'll survive > on it! > > I have not been able to read all the books out there > on high protein/low > carb diets. Hopefully, someone can answer to my > concerns about my kidneys. > My mom just passed away-she had chronic kidney > failure, and late in life, my > grandmother developed kidney failure. Their > physician does not, however, > feel it is genetic, just coincidence. Does anyone > know of kidney trouble on > this diet? BTW, my kidney function checks out great > on blood work > regularly. > > I'm glad to be a part of this list. Looking forward > to gaining some good > tips. > > ~Kim > > > ------------------------------------------------------------------------ > Last chance to earn $5000 for your charity of > choice! > http://www.onelist.com > Deadline for " GROW TO GIVE " is June 19. See > homepage for details. > ------------------------------------------------------------------------ > We Can Work Together For A Better You > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 1999 Report Share Posted June 22, 1999 Hi Terri welcome you will like this bunch of ppl they are full of support and ideas. If you have any questions feel free to ask Sue 310/275/180 --- TerriE1705@... wrote: > From: TerriE1705@... > > Hi Kim > I just started to day I don't have much time to > work out either because we > are rasing a drug baby that we adopted. But I need > to lose weight and that > what I am doing my husband lost 41 pound on it and I > hope to lose a lot to. > Let do it together I no we can do it. > Terri > > ------------------------------------------------------------------------ > With more than 20 million e-mails exchanged daily... > http://www.onelist.com > ...ONElist is home to the liveliest discussions on > the Internet! > ------------------------------------------------------------------------ > We Can Work Together For A Better You > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 Hi Jeannie, I am new to the list and the diet also. You are going to feel great in just a few days and this diet is going to change your life! This list is great, I have asked for help several times and I have gotten back great information. (Thank you to all the kind people who have responded to my questions.) I am in North Florida not so far away. Good luck and God Bless you. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Brina!! Welcome to the list ) !! Hugs Penny 173/163/130 meet my Family at : <A HREF= " http://www.geocities.com/Heartland/Pines/6116/wilsons.html " >http://www.g eocities.com/Heartland/Pines/6116/wilsons.html </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Hi Brina, Welcome to our list! There is no better place for you to be on the web if you really want to lose weight and lose it with a really great group of people. There are so many who are helpful and have such great ideas on how to make this diet and way of life work. Just be sure to post your questions, problems, and of course your successes. You will be successful with this WOE, I promise. Good luck to you two. Bill 315/268/225 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 1999 Report Share Posted July 27, 1999 Hi , Welcome to our list! It is so great to have another person join our list. You will find a lot of great support, ideas, and knowledge in this list. If you have any questions be sure to ask them, someone will be sure to have the answer for you. Good luck in your weight loss! Bill 315/267/225 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 In a message dated 7/30/99 7:50:59 PM !!!First Boot!!!, tdobos@... writes: << No pasta? No rice? No bread? I don't know if I could do that >> Hi Terri! I am not a big sweet eater, but I felt the same way about the bread, rice and pasta....especially the rice. We used to have that for dinner all the time. Steak and rice, chicken and rice, you name it and rice! ) I live in S. Florida, so black beans and rice are very popular here and I used to have that as a meal a lot, or I would eat plain pasta or have cereal for dinner. My husband works nights, so I never cooked big meals for myself...I would just have a lot of carbs. So, I couldn't imagine how I was going to do this way of eating. Anyway, I decided to give the Induction a try and believe it or not I don't miss anything. There are plenty of things that I like to eat that I can eat on this diet that I don't feel tempted to eat the things I used to. Give it a try...you might be surprised. There are some desserts in Dr. A's book that you can make to help with the sugar craving, but as I said I don't eat many sweets, so the the food that I reach for when I need something sweet is SF Jello. Hope you decide to give it a try. You've come to the right place for help and support! Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 In a message dated 7/30/99 3:32:26 PM Central Daylight Time, GRSHOPER1@... writes: << Hope you decide to give it a try. You've come to the right place for help and support! Marilyn >> Enjoyed what you had to say here, It's easier for me though to resist the bread and the pasta and the fruit. But, my love is CHOCOLATE!!!!! Luckily the altrnatives as curbed my need for it. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 In a message dated 7/30/99 2:51:08 PM Central Daylight Time, tdobos@... writes: << So I've started to read the book and it sounds interesting, but I cannot imagine, absolutely cannot fathom giving up my carbs. No pasta? No rice? No bread? I don't know if I could do that. I've pretty much given up " fat " ice cream (I eat DQ on a rare occasion) but other sugars? Hmmm, sounds tough. I wanted to get other's perspectives and hear how you all are doing on this " diet " . I had started Herbalife in the beginning of July, but only recently began to really take the products so I don't yet know if they work. >> Terri, What really helps me stay on track is this list. I mean it, it really does help because it keeps me focused on what's on my goals and it's fun to chat with everyone. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 1999 Report Share Posted July 30, 1999 Well everyone.. my week in finally over!!!!! And the weekend is here!!!! Have a great weekend! and I look forward to reading like 120 emails or so on Monday!!!!! Mol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1999 Report Share Posted October 30, 1999 Cheryl, Hi it's nice to meet a fellow " mean red head " !I hope you find all that you're looking for here. Mandy mom of Terrance 6 & Seth 1 w/cf Re: intro > > >Hi everyone, >I just joined this list. I have a 14 year old son ( Ty) who has CF I think? >He had a pos. sweat test at 18 mo and was treated at the local hosp then at >9 he was admitted and re tested and tested neg. then they genotyped him but >this was before they had discovered the varaints and he tested neg there >also so they refused to treat him unless he was actually sick. He has yearly >broncitas, pnomonia, weight gain problems ( before the neg sweats he was >finally gaining weight on pancrese). Weve lived in the midwest very rural >and had no contact with a CF center. This month we moved to a biger city in >Washington, cross country and they have a CF center and he will be going >there next week. Our new next door neighbor has a child with CF and they >are introducing us. Ty has lost over 10 lbs in the last 6 weeks and altho >most time only has a mild caugh unless its winter, he's starting early this >year. He also has schizoaffective disorder bipolar. so is on meds for that. >the broncodialater evelate his mood too high and cause him to be psychotic. >So thats where were starting from. Im fairly ininformed and out of date with >info about CF and I know they have made big changes since 1992 when ty quit >being treated. I guess were hoping for a clearer answer this time. I also >have an older son 16 that is schizoaffective schizophrenic. We have never >had any contact with other families dealing with CF and hope to learn from >this group. if anyone has any ideas or information on being dignosed and un >dignosed and dignosed again please let me know. have a good night cheryl > >>This is a secular list. > >The opinions and information exchanged on this list should in no way be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > >---------------------------------------- > >If you know someone who would find cfparents useful, have them follow this link: http://www.onelist.com/subscribe/cfparents > >---------------------------------------- > >Come chat at our webpage! http://members.tripod.com/cfparents/ > >---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Welcome to the group Amy. I don't understand why the Dr made the diagnosis of GD. I can't really help much on that but I'm sure other in the group will be able to. It does sound as though you have been in remission and overall have done really well. Especially when it comes to being able to monitor yourself. It is certainly the experience of many that there are symptoms even when within 'normal ranges'. There are lots of posts in the archives on this that would be helpful for you to go over. We have recently been discussing the symptoms of GD, hypo, hyper etc and trying to find commonalties - thanks to Terry - she has begun a symptom list. Nails are certainly a symptom of both hypo and hyper - they generally become brittle, easily broken, split, and have ridges from top to bottom. Do you have other symptoms at present? Are you still on meds? Take Care Caroline Amy wrote: > Hi all. I'm so excited I found this group! Here's my intro story: > in 1996 I discovered hyperthyroidism from mainly weight loss and the > typical sympoms - although I did enjoy eating all that food! I went > on tapazole and after a year was back to normal. My uptake tests > showed it wasn't graves but my dr says that one of the meds I was on > for migranes was blocking it so - he just said it was graves - no > questions asked. I got checked every year faithfully. I could tell > ups and downs and they were verified by 1 point here and there - all > within normal so there was nothing to do about it. Now I'm back with > all the same old symptoms and an appt tomorrow. Hopefully it's > nothing - although I still think this disease affects you even when > you are " normal " . At least it does me. Anywho - i had an endo > comment on my nails showing a symptom but I can't remember what it > was about - any thoughts? > > Nice to meet you all! > Amy > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2001 Report Share Posted January 17, 2001 Welcome to the group Amy. I don't understand why the Dr made the diagnosis of GD. I can't really help much on that but I'm sure other in the group will be able to. It does sound as though you have been in remission and overall have done really well. Especially when it comes to being able to monitor yourself. It is certainly the experience of many that there are symptoms even when within 'normal ranges'. There are lots of posts in the archives on this that would be helpful for you to go over. We have recently been discussing the symptoms of GD, hypo, hyper etc and trying to find commonalties - thanks to Terry - she has begun a symptom list. Nails are certainly a symptom of both hypo and hyper - they generally become brittle, easily broken, split, and have ridges from top to bottom. Do you have other symptoms at present? Are you still on meds? Take Care Caroline Amy wrote: > Hi all. I'm so excited I found this group! Here's my intro story: > in 1996 I discovered hyperthyroidism from mainly weight loss and the > typical sympoms - although I did enjoy eating all that food! I went > on tapazole and after a year was back to normal. My uptake tests > showed it wasn't graves but my dr says that one of the meds I was on > for migranes was blocking it so - he just said it was graves - no > questions asked. I got checked every year faithfully. I could tell > ups and downs and they were verified by 1 point here and there - all > within normal so there was nothing to do about it. Now I'm back with > all the same old symptoms and an appt tomorrow. Hopefully it's > nothing - although I still think this disease affects you even when > you are " normal " . At least it does me. Anywho - i had an endo > comment on my nails showing a symptom but I can't remember what it > was about - any thoughts? > > Nice to meet you all! > Amy > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 I've been off meds for a while now. I responded well to the tapazole. The dr I saw yesterday said there is definitely something going on - I was hyper-reactive to the - ugh memory lapse here -got it - reflex test. My brain just isn't here this morning. My temp was up from normal and I was definitely shaky last night! I'm feel like I'm eating for two although i'm really not Anyway - she ran the regular test and even threw in an antibody test. So, now I'm trying to read up on antibodies to see what they say. So, Basically I feel like crap and am starting to rage again. I went off on my husband last night for filling out a magazine card. How stupid is that! I'm so grateful to have found this group...nobody *really* understands unless they have it too. I've read through a ton of the archives and gotten a lot of info. thanks again! Amy > >Reply-To: graves_supportegroups >To: graves_supportegroups >Subject: Re: intro >Date: Thu, 18 Jan 2001 17:25:23 +1100 > >Welcome to the group Amy. > >I don't understand why the Dr made the diagnosis of GD. I can't really help >much on that but I'm sure other in the >group will be able to. > >It does sound as though you have been in remission and overall have done >really well. Especially when it comes to >being able to monitor yourself. It is certainly the experience of many that >there are symptoms even when within >'normal ranges'. There are lots of posts in the archives on this that would >be helpful for you to go over. > >We have recently been discussing the symptoms of GD, hypo, hyper etc and >trying to find commonalties - thanks to >Terry - she has begun a symptom list. Nails are certainly a symptom of >both hypo and hyper - they generally become >brittle, easily broken, split, and have ridges from top to bottom. > >Do you have other symptoms at present? Are you still on meds? > >Take Care >Caroline > >Amy wrote: > > > Hi all. I'm so excited I found this group! Here's my intro story: > > in 1996 I discovered hyperthyroidism from mainly weight loss and the > > typical sympoms - although I did enjoy eating all that food! I went > > on tapazole and after a year was back to normal. My uptake tests > > showed it wasn't graves but my dr says that one of the meds I was on > > for migranes was blocking it so - he just said it was graves - no > > questions asked. I got checked every year faithfully. I could tell > > ups and downs and they were verified by 1 point here and there - all > > within normal so there was nothing to do about it. Now I'm back with > > all the same old symptoms and an appt tomorrow. Hopefully it's > > nothing - although I still think this disease affects you even when > > you are " normal " . At least it does me. Anywho - i had an endo > > comment on my nails showing a symptom but I can't remember what it > > was about - any thoughts? > > > > Nice to meet you all! > > Amy > > > > ------------------------------------- > > The Graves' list is intended for informational purposes only and is not >intended to replace expert medical care. > > Please consult your doctor before changing or trying new treatments. > > ---------------------------------------- > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 Hi Gladys welcome to the group.. and I'm sorry to hear about your husband...Aisha , the one that started the group has a web site that has a detailed article of what sarcoidoisis is and how it affects the body along with current treatments and so on.. the address is www.elderwyn.com/neurosarcoidosis/ try that first and see if it can give you some clues as to what's going on with your husband... and once again welcome.. Hugs, -- Intro Hi! My husband was diagnosed with sarcoidosis a little over 20 years ago. Subsequently our little girl (now 20) was diagnosed with cancer and his health issues kind of got forgotten while we got caught up with life. Over the years, he has talked about his spleen flaring up occasionally, etc. but nothing major. Now, he is having a full flare up like he did at the very beginning. After doing some reading on the web, I'm also wondering how many of the other health issues he's faced over the past years may have been sarcoidosis related: Polyps on his vocal cords, numbness and tingling in his fingers (for which he had surgery to remove a bone spur on his spine), chronic arthritic type pain in his hands, etc. Right now, he has a lot of congestion in his chest and a chronic cough. I'm doing now what I wish I had done years ago and trying to learn all I can about this disease. For some reason, I got it in my head that it ran its course in about ten years. Obviously, since its twenty years later, I was wrong. What should we be doing to maintain his health? What can I do to help him? Thanks for being here. Gladys Stefany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Thank you, I only just skimmed through the article and have realized how neglectfully my husband's illness has been attended to (or not). I feel so badly. I'm going to be sure he checks into all of this. Thank you!!!!! Gladys > Hi Gladys welcome to the group.. and I'm sorry to hear about your husband.. > Aisha , the one that started the group has a web site that has a detailed > article of what sarcoidoisis is and how it affects the body along with > current treatments and so on.. the address is www.elderwyn > com/neurosarcoidosis/ try that first and see if it can give you some clues > as to what's going on with your husband... and once again welcome.. > > Hugs, > > > > -- Intro > > Hi! > > My husband was diagnosed with sarcoidosis a little over 20 years > ago. Subsequently our little girl (now 20) was diagnosed with cancer > and his health issues kind of got forgotten while we got caught up > with life. Over the years, he has talked about his spleen flaring up > occasionally, etc. but nothing major. Now, he is having a full flare > up like he did at the very beginning. After doing some reading on > the web, I'm also wondering how many of the other health issues he's > faced over the past years may have been sarcoidosis related: Polyps > on his vocal cords, numbness and tingling in his fingers (for which > he had surgery to remove a bone spur on his spine), chronic arthritic > type pain in his hands, etc. Right now, he has a lot of congestion > in his chest and a chronic cough. > > I'm doing now what I wish I had done years ago and trying to learn > all I can about this disease. For some reason, I got it in my head > that it ran its course in about ten years. Obviously, since its > twenty years later, I was wrong. What should we be doing to maintain > his health? What can I do to help him? > > Thanks for being here. > > Gladys Stefany > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Gladys is he seeing a specialist for his Sarcoidosis? If not he needs to. A lot of what you described could be Sarcoid related, especially the chest problem and the cough. High Blood Pressure, Cholesterol fluctuation, bowel problems, back pain, you name it, all this is related. I never got treatment either but now I am we finally do have a treatment for this. I do not know where you live, but here in Ohio we have an excellent doctor for Sarcoidosis. Sharon Intro Hi!My husband was diagnosed with sarcoidosis a little over 20 years ago. Subsequently our little girl (now 20) was diagnosed with cancer and his health issues kind of got forgotten while we got caught up with life. Over the years, he has talked about his spleen flaring up occasionally, etc. but nothing major. Now, he is having a full flare up like he did at the very beginning. After doing some reading on the web, I'm also wondering how many of the other health issues he's faced over the past years may have been sarcoidosis related: Polyps on his vocal cords, numbness and tingling in his fingers (for which he had surgery to remove a bone spur on his spine), chronic arthritic type pain in his hands, etc. Right now, he has a lot of congestion in his chest and a chronic cough. I'm doing now what I wish I had done years ago and trying to learn all I can about this disease. For some reason, I got it in my head that it ran its course in about ten years. Obviously, since its twenty years later, I was wrong. What should we be doing to maintain his health? What can I do to help him?Thanks for being here.Gladys Stefany~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Hi, Gladys. Welcome to our family. Don't beat yourself up about now researching your husband's illness years ago; you were just assuming the doctors knew what they were talking about. I'm an R.N. and when I was diagnosed in 1994 with a lymph node biopsy, I was told that sarc usually resolves on its own & it was never mentioned again. I did read a couple of articles on it, with descriptions of neurologic, eye, heart, etc. involvement, and thought, " Whew, I'm glad I don't have that kind of sarc! " I didn't realize that sarc could attack any organ system, even years later. Now I have bilateral hearing loss, neurological involvement, neuropathy in my feet, cataracts (from the Prednisone to treat the sarc), and a few other symptoms. You will find this group of people to be friendly, accepting, loving, supportive and SMART. Glad you found us. Rose in Indiana Intro > Hi! > > My husband was diagnosed with sarcoidosis a little over 20 years > ago. Subsequently our little girl (now 20) was diagnosed with cancer > and his health issues kind of got forgotten while we got caught up > with life. Over the years, he has talked about his spleen flaring up > occasionally, etc. but nothing major. Now, he is having a full flare > up like he did at the very beginning. After doing some reading on > the web, I'm also wondering how many of the other health issues he's > faced over the past years may have been sarcoidosis related: Polyps > on his vocal cords, numbness and tingling in his fingers (for which > he had surgery to remove a bone spur on his spine), chronic arthritic > type pain in his hands, etc. Right now, he has a lot of congestion > in his chest and a chronic cough. > > I'm doing now what I wish I had done years ago and trying to learn > all I can about this disease. For some reason, I got it in my head > that it ran its course in about ten years. Obviously, since its > twenty years later, I was wrong. What should we be doing to maintain > his health? What can I do to help him? > > Thanks for being here. > > Gladys Stefany > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > Live Group Chat:- > Mondays & Fridays 10pm EST USA > http://www.elderwyn.com/neurosarcoidosis/chat.php > > Message Archives and Digest Attachment Pictures:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Bookmarks:- > Add a website URL you have found useful. > http://groups.yahoo.com/group/Neurosarcoidosis/links > > Personal Complaints or problems:- > Please email the moderators > mailto:Neurosarcoidosis-owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit:- > http://groups.yahoo.com/group/Neurosarcoidosis/join > > To subscribe email neurosarcoidosis-subscribe > To unsubscribe email neurosarcoidosis-unsubscribe > > The moderators will not be doing it for you! > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Come stand by my side where I am going, > Take my hand if I should stumble and fall, > It's the strength and love that you share, > That gives me what I need most of all. > - Hoyt Axton > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Hi, Sharon! Thank you very much for the welcome and the information. He has not been seeing a specialist just internists. We don't know where to start. Someone sent me a list of doctors in Manhattan today who can help but, I don't know which one he should start with. What kind of doctor are you seeing? Gladys > Gladys is he seeing a specialist for his Sarcoidosis? > > If not he needs to. > > A lot of what you described could be Sarcoid related, especially the chest > problem and the cough. > > High Blood Pressure, Cholesterol fluctuation, bowel problems, back pain, you > name it, all this is related. > > I never got treatment either but now I am we finally do have a treatment for > this. > > I do not know where you live, but here in Ohio we have an excellent doctor > for Sarcoidosis. > > Sharon > Intro > > > Hi! > > My husband was diagnosed with sarcoidosis a little over 20 years > ago. Subsequently our little girl (now 20) was diagnosed with cancer > and his health issues kind of got forgotten while we got caught up > with life. Over the years, he has talked about his spleen flaring up > occasionally, etc. but nothing major. Now, he is having a full flare > up like he did at the very beginning. After doing some reading on > the web, I'm also wondering how many of the other health issues he's > faced over the past years may have been sarcoidosis related: Polyps > on his vocal cords, numbness and tingling in his fingers (for which > he had surgery to remove a bone spur on his spine), chronic arthritic > type pain in his hands, etc. Right now, he has a lot of congestion > in his chest and a chronic cough. > > I'm doing now what I wish I had done years ago and trying to learn > all I can about this disease. For some reason, I got it in my head > that it ran its course in about ten years. Obviously, since its > twenty years later, I was wrong. What should we be doing to maintain > his health? What can I do to help him? > > Thanks for being here. > > Gladys Stefany > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Rose - My husband is not an email list person but, I just read your post to him and he said " I have that! I have that!! " I feel like a giant light bulb just came on. We thought the vision problems were middle age. We thought the hearing problems were congenital (his father and grandmother both wore hearing aids) or a result of many years playing in a band. He also is taking medication for high blood pressure. I guess we just are trying to figure out where to start. A very nice young woman sent me the names and phone numbers of some specialists in New York City today, but I'm not sure which one he should start with. Is there one type of doctor who you should start with? Gladys (In the Pocono Mts. of PA) > Hi, Gladys. Welcome to our family. Don't beat yourself up about now > researching your husband's illness years ago; you were just assuming the > doctors knew what they were talking about. I'm an R.N. and when I was > diagnosed in 1994 with a lymph node biopsy, I was told that sarc usually > resolves on its own & it was never mentioned again. I did read a couple of > articles on it, with descriptions of neurologic, eye, heart, etc. > involvement, and thought, " Whew, I'm glad I don't have that kind of sarc! " > I didn't realize that sarc could attack any organ system, even years later. > Now I have bilateral hearing loss, neurological involvement, neuropathy in > my feet, cataracts (from the Prednisone to treat the sarc), and a few other > symptoms. You will find this group of people to be friendly, accepting, > loving, supportive and SMART. Glad you found us. Rose in Indiana > Intro > > > > Hi! > > > > My husband was diagnosed with sarcoidosis a little over 20 years > > ago. Subsequently our little girl (now 20) was diagnosed with cancer > > and his health issues kind of got forgotten while we got caught up > > with life. Over the years, he has talked about his spleen flaring up > > occasionally, etc. but nothing major. Now, he is having a full flare > > up like he did at the very beginning. After doing some reading on > > the web, I'm also wondering how many of the other health issues he's > > faced over the past years may have been sarcoidosis related: Polyps > > on his vocal cords, numbness and tingling in his fingers (for which > > he had surgery to remove a bone spur on his spine), chronic arthritic > > type pain in his hands, etc. Right now, he has a lot of congestion > > in his chest and a chronic cough. > > > > I'm doing now what I wish I had done years ago and trying to learn > > all I can about this disease. For some reason, I got it in my head > > that it ran its course in about ten years. Obviously, since its > > twenty years later, I was wrong. What should we be doing to maintain > > his health? What can I do to help him? > > > > Thanks for being here. > > > > Gladys Stefany > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > Live Group Chat:- > > Mondays & Fridays 10pm EST USA > > http://www.elderwyn.com/neurosarcoidosis/chat.php > > > > Message Archives and Digest Attachment Pictures:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Bookmarks:- > > Add a website URL you have found useful. > > http://groups.yahoo.com/group/Neurosarcoidosis/links > > > > Personal Complaints or problems:- > > Please email the moderators > > mailto:Neurosarcoidosis-owner > > > > Subscription Details:- > > 1) Individual email - means that every email sent to the list you receive. > > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > > To modify your subscription settings please visit:- > > http://groups.yahoo.com/group/Neurosarcoidosis/join > > > > To subscribe email neurosarcoidosis-subscribe > > To unsubscribe email neurosarcoidosis-unsubscribe > > > > The moderators will not be doing it for you! > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > Come stand by my side where I am going, > > Take my hand if I should stumble and fall, > > It's the strength and love that you share, > > That gives me what I need most of all. > > - Hoyt Axton > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 I am only going to a Sarcoidosis specialist at the University of Cincinnati, Dr. P. Baughman. He is one of the tops in this field. My family doctor is another story so as of this Tuesday I am going to a new doctor and a woman to boot. You may want to check out one of the more prominent Universities near you and to find out who is into this disease. Sharon Intro> > > Hi!> > My husband was diagnosed with sarcoidosis a little over 20 years> ago. Subsequently our little girl (now 20) was diagnosed with cancer> and his health issues kind of got forgotten while we got caught up> with life. Over the years, he has talked about his spleen flaring up> occasionally, etc. but nothing major. Now, he is having a full flare> up like he did at the very beginning. After doing some reading on> the web, I'm also wondering how many of the other health issues he's> faced over the past years may have been sarcoidosis related: Polyps> on his vocal cords, numbness and tingling in his fingers (for which> he had surgery to remove a bone spur on his spine), chronic arthritic> type pain in his hands, etc. Right now, he has a lot of congestion> in his chest and a chronic cough.> > I'm doing now what I wish I had done years ago and trying to learn> all I can about this disease. For some reason, I got it in my head> that it ran its course in about ten years. Obviously, since its> twenty years later, I was wrong. What should we be doing to maintain> his health? What can I do to help him?> > Thanks for being here.> > Gladys Stefany> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2003 Report Share Posted September 12, 2003 Thanks, Sharon! > > Gladys is he seeing a specialist for his Sarcoidosis? > > > > If not he needs to. > > > > A lot of what you described could be Sarcoid related, especially > the chest > > problem and the cough. > > > > High Blood Pressure, Cholesterol fluctuation, bowel problems, back > pain, you > > name it, all this is related. > > > > I never got treatment either but now I am we finally do have a > treatment for > > this. > > > > I do not know where you live, but here in Ohio we have an excellent > doctor > > for Sarcoidosis. > > > > Sharon > > Intro > > > > > > Hi! > > > > My husband was diagnosed with sarcoidosis a little over 20 years > > ago. Subsequently our little girl (now 20) was diagnosed with > cancer > > and his health issues kind of got forgotten while we got caught up > > with life. Over the years, he has talked about his spleen flaring > up > > occasionally, etc. but nothing major. Now, he is having a full > flare > > up like he did at the very beginning. After doing some reading on > > the web, I'm also wondering how many of the other health issues > he's > > faced over the past years may have been sarcoidosis related: Polyps > > on his vocal cords, numbness and tingling in his fingers (for which > > he had surgery to remove a bone spur on his spine), chronic > arthritic > > type pain in his hands, etc. Right now, he has a lot of congestion > > in his chest and a chronic cough. > > > > I'm doing now what I wish I had done years ago and trying to learn > > all I can about this disease. For some reason, I got it in my head > > that it ran its course in about ten years. Obviously, since its > > twenty years later, I was wrong. What should we be doing to > maintain > > his health? What can I do to help him? > > > > Thanks for being here. > > > > Gladys Stefany > > > > > > Quote Link to comment Share on other sites More sharing options...
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