Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 In a message dated 8/26/01 4:14:54 AM Pacific Daylight Time, nasuca@... writes: << One question I have come up with is: Since you can tolerate sweets in your post op surgery state are you concerned with sabotaging the surgery results by out of control sugar eating? Would this be a reason to choose rny instead? >> i'm only a month out from surgery but I dont think this would be areason to get the RNY. The same basic rule applies to either surgery. Protein first and believe me...that doesnt leave much room for other things...I'm sure many of the more knowledgable will answer...but these two surgeries are very different...and you can sabotage no matter what surgery you have if you don't follow the rules....it just might be harder with the DS since you are also malabsorbing more than the RNY. AJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 In a message dated 08/26/2001 6:15:39 AM Central Daylight Time, nasuca@... writes: > I am i and I am in the research stage. > > One question I have come up with is: Since you can tolerate sweets in your > post op surgery state are you concerned with sabotaging the surgery results > by out of control sugar eating? Would this be a reason to choose rny > instead? > > Thanks in advance > > i > > i, I was a sweets eater and proudly say I am still a sweets eater. I have many thin friends who are sweets eaters also. What I am saying is that being a sweets eater is nothing to be ashamed of. Initially post op I did not eat that many sweets there wasn't room and they didn't appeal to me that much. You have to remember that we malabsorb fats and most of the sweets we like are also loaded with fat. Therefore, they are not near as damaging. Now I think if you drank a 6 pack of regular coke a day, it might affect your weight loss or maintenance because there is no fat in that. Also, our knew stomach size eliminates any major " binge " on sweets. Also a binge on sweets is detered by the fact that you will spend more time in the bathroom getting rid of the malabsorbed fat that went down with the sweets. I eat sweets daily and my weight is so stable it amazes me. I may have lost a few more pounds if I didn't eat any sweets, but I would rather be very stable and not constantly feel guilty about the sweets and just live!!!! Typing as I drink my coffee that has real sugar and cream in it!!! Dawn Dr. Hess, Bowling Green, OH BPD/DS 4/27/00 www.duodenalswitch.com 267 to 165 size 22 to size 10 have made size goal no more high blood pressure, sore feet, or dieting! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 In a message dated 8/26/01 7:44:14 AM, duodenalswitch writes: << One question I have come up with is: Since you can tolerate sweets in your post op surgery state are you concerned with sabotaging the surgery results by out of control sugar eating? Would this be a reason to choose rny instead? >> i: This wasn't a real concern for me because I didn't have out of control sugar eating as a pre-op. I would eat sugar, but not every day (maybe a few times a week or every two weeks). My main problem was carbs (loved them!!! Ate way too much of them) and huge portions. My daily exercise (I walked quite a bit) was never enough to keep the weight off. I haven't really craved sweets after my surgery, either. Initially, I couldn't stand chocolate. NOw, I can eat it (and do so on occasion) but I find that I more often enjoy fruity sweet things. I have to watch the juices/iced tea, etc. because of the high sugar content (it can really add up, especially in this weather). So, I always have some Crystal Light iced tea made up, etc. and take it with me. So, bottom line is I really can't speak for someone who does have a huge sugar craving as a pre-op. I would think that counselling would be the more permanant option to deal with 'head hunger' or 'emotional eating' and would try this FIRST before the RNY surgery. Why? BEcause the dumping experience is not always guaranteed. Some do not experience it at all or to any great degree. Secondly, it may lessen over time. If one doesn't have their eating patterns (which may be emotionall based) understood, then there is great potential to slip into those same patterns as a long term post-op and hence experience late weight regain. I know that a lot of DS post-ops just don't have the same capacity or interest in eating large quantities of sweets. Many of us *may* consume sweet things but not in huge amounts (a little bit almost always satisfies). Each person has their own set of reasons for choosing one surgery over another. Many surgeons firmly believe that those with huge sugar addicitions are best off with an RNY, since this surgery can cause negative reactions with consumption of sugars. I'm sure there are those who have adapted their behavior accordingly and beaten their sugar addictions. I just don't think that in the long run the dumping syndrome is adequate enough to always be a solution to such problems. all the best, lap ds with gallbladder removal January 25, 2001 Dr. Ganger/Mt. Sinai/NYC six months post-op and still feelin' fabu! preop: 307 lbs/bmi 45 now: 224 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 > One question I have come up with is: Since you can tolerate > sweets in your post op surgery state are you concerned with > sabotaging the surgery results by out of control sugar eating? > Would this be a reason to choose rny instead? Some people choose RNY because they feel that the dumping syndrome will " keep them in line " . But the fact is that not everyone dumps, and those who DO dump usually see the effect lessening with time. So, choosing that option for that reason seems questionable at best. My feeling is that it's wisest to pick a procedure based on overall quality of life, and based on the published clinical outcomes. The data shows that DS patients get and keep off 70-80% of their weight LONG TERM. Those successful DS folks were no better than you or I in the sugar department. You know? They weren't hand-picked for their ability to avoid sugar after surgery, and I'm sure they were not sugar saints. They were just like you and me, and they have done just fine. M. --- in Valrico, FL, age 39 Lap DGB/DS by Dr. Rabkin 10-19-99 http://www.duodenalswitch.com Starting weight 299, now 156 Starting BMI 49.7, now 26.0 Starting size 26/26, now 10/12 Direct replies: mailto:melanie@... _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 > I am i and I am in the research stage. > > One question I have come up with is: Since you can tolerate sweets in your > post op surgery state are you concerned with sabotaging the surgery results > by out of control sugar eating? Would this be a reason to choose rny > instead? > > Thanks in advance > > i I,am now 1 month and 6 days postop and sweets are an option for me. The pisser is they just don't taste as good. I used to take a cup of coffe with 3 sugars now I use 1/2 tsp same with iced tea, my fiancee took a sip of my tea other day and and asked wheres the sugar? And she's a thin diabetic. It is amazing how my tastes have changed does anyone one else notice changes in taste? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 are you concerned with sabotaging the surgery results > by out of control sugar eating? Would this be a reason to choose rny > instead?>>>> Not at all, i! I was a big sweet eater before surgery and now its so-so.....I have sweets every day but actually much prefer proteins and some complex carbs over sweets. I actully prefer grapes, peaches and watermellon over a candy bar!! Im only 22 lbs from my goal so I think that says plenty! I wouldnt have the rny for all the money in the world....... Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 It is amazing how my tastes have changed does anyone one else notice changes in taste? >>>>> Yeah, ! After surgery for the first few weeks I couldnt tolerate foods with sugar in them. I had to dilute apple juice in half becuz it was just too sweet! And heres the kicker.....I used to LOVE ice cream loaded with marshmellow sauce and all the trimmings......I do not like ice cream anymore! It tastes gross to me and is way too rich for my tastes! Who woulda thunk?? Judie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2001 Report Share Posted August 26, 2001 Re: Re: hello > with marshmellow sauce and all the trimmings......I do not like ice cream > anymore! It tastes gross to me and is way too rich for my tastes! Who > woulda thunk?? > Maybe there's hope for me, then! I'm not the hugest sugar eater, but starrrrrchhh...ohhh, yum!! I'd love it if I loved it less!!! alyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2007 Report Share Posted November 4, 2007 Thank you for the information Tracie. Unfortunately my mother is almost completely paralyzed due to her strokes with only one usable arm. I will have to be her ears here. I have never heard anything about strokes being related to NS and it is good to hear that my family is not alone. She was diagnosed by the Mayo clinic and they treated her strokes but none of the doctors could explain whether there was a connection between her two strokes and her disease. She has not shown much improvement since the strokes ten months ago and it is hard to continue to be hopeful about her recovery. Thank you again for the information. Kendall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2007 Report Share Posted November 4, 2007 Kendall, You are most welcome. I'm so sorry that your Mom has had the strokes. For me, that is such a huge issue, so many of my uncles and my grandfather had strokes-- and I know the disablity is frustrating for everyone. I'll try to find some links that explain the connections. Here is one site that you can print out the article and share it with her neurologists. http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html As far as you having to be her ears and voice-- please do so! We welcome the opportunity to help family understand this disease, and we all need an advocate to help us when we go in to see the MD's. The more we get the word out there-- the better care we can get- and hopefully, we'll have fewer stories similar to your mom. Bless you, and sincerely, welcome to the family-- we wish you didn't have to be here. Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Terri,What was going on with your vit D?Blessings,Beckymosaicgirl1 wrote: Hey All, I haven't been around for awhile but I hope everyone enjoyed the holidays and are ready for the best new year ever. I had some big problems with the imuran and my vitamin D so I felt really bad but am off now and am better. Did too much over the holidays but it sure was a blast. So just want to say Hi and I have missed you all. Will keep checking in and reading posts now that I have more energy. Love to all. Terri G. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Becky, My vitamin D level was in the dirt. I start on prescription vitamin D and I have almost doubled it. I only have to take it 1 time a month now. Thanks for your concern. Terri > Hey All, > I haven't been around for awhile but I hope everyone enjoyed the holidays and are ready for the best new year ever. I had some big problems with the imuran and my vitamin D so I felt really bad but am off now and am better. Did too much over the holidays but it sure was a blast. > So just want to say Hi and I have missed you all. Will keep checking in and reading posts now that I have more energy. > Love to all. > Terri G. > > > > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Good to see you posting, Terri. Sorry you are having problems with the Imuran but hope you are better now. Glad to hear that you had a good holiday altho you said "I did too much"! We all know better than to do that, but I am guilty also! My girls helped and I really did not do much cooking and etc, but with everyone there for two days, I was EXHAUSTED and there is no other way to put it! It took me about a week to get over it. Hoping 2008 will be a better year for all of us. Thanks for checking in. Hugs, Darlene NS Co-Owner/Moderator hello Hey All, I haven't been around for awhile but I hope everyone enjoyed the holidays and are ready for the best new year ever. I had some big problems with the imuran and my vitamin D so I felt really bad but am off now and am better. Did too much over the holidays but it sure was a blast. So just want to say Hi and I have missed you all. Will keep checking in and reading posts now that I have more energy. Love to all. Terri G. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Terri,Mine was 17 and then 18. Endocrinologist flipped and started talking about my cancer risks, etc. I was told by my s Hopkins sarcoidosis specialist and my rheum to NOT take huge amts of vit D (endo wanted me to take 50,000u every 2 weeks) b/c could make my sarcoidosis worse. So we're watching and waiting and I am drinking glucernas (are full of vitamins...made for diabetics) twice a day. You're in my prayers Terri. I figure my chance of problems with the low vit D is insignificant compared with my heart involvement and making it worse with the vit D overlaod. What a mess. Blessings,Beckymosaicgirl1 wrote: Becky, My vitamin D level was in the dirt. I start on prescription vitamin D and I have almost doubled it. I only have to take it 1 time a month now. Thanks for your concern. Terri > Hey All, > I haven't been around for awhile but I hope everyone enjoyed the holidays and are ready for the best new year ever. I had some big problems with the imuran and my vitamin D so I felt really bad but am off now and am better. Did too much over the holidays but it sure was a blast. > So just want to say Hi and I have missed you all. Will keep checking in and reading posts now that I have more energy. > Love to all. > Terri G. > > > > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Hope you get some help, I know it's so frustrating sometimes, I have a doctor who will do what ever it takes, but an insurance company that doesn't want to pay for anything. Take care, and God Bless, Marl a Hi all, Just a quick hello - hope everyone is as well as they can be. I have been lurking but not posting. I just feel like being quiet right now. Just know you are all on my mind and in my prayers. I am off to s Hopkins again next week to look for help. My neurologist here can't help me with treatment anymore; he has done all he is comfortable doing. Take care and I will let you know what is going on later. Terri G. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Hi Tracie, I just noticed your reference to the Schwarzbein Protocol. I haven't been around (as noted previously) and was introduced to it by you today. Wow, did they show a lot of my symptoms, huh? I noticed the fees for stuff were pretty high . I haven't checked out the fees for her books yet. Some questions- how long have you been on it and how much improvement have you noticed? Have you mentioned it to your other drs.? (Just wondering cause they are so stubborn sometimes.) Thanks for the info. Debbie T. Co-Moderator Re: Re: hello Terri, You sound like so many of us, spend a few years on prednisone, and the body starts atrophying, and then the signs that were there are masked-- or maybe in remission, and no one knows what to do-- so we must be "crazy", "depressed", "hormonal" or all of the above. We all know that we're not all of the above, but that the issues and frustrations of seeing our bodies become alien to us-- is depressing on it's own. You know my lecture on depression-- it's a secondary issue to not getting adequate medical care... I see you take Vit D injections-- can you handle getting out into the sunshine for a few minutes each day. Even in overcast skys, 10 minutes outside makes our bodies produce it's own Vit D to the amount we generally need-- add the D that we get from the foods we eat-- and it is sunshine that activates it-- and that should do the trick. It truly does help lift the "depression" fog that so many of us suffer with. I personally am finding that the synergy of nutrients and vitamins is skewed in my body-- so it is so important to get what we can from nature to enhance what is happening to us. For me, so much of my neuropathy is from mineral defiency, and from high blood sugar. IT is true that once permanent damage has been done, it's gonna be hard to repair-- but at least if we are doing what we can nutritionally-- we're taking care of ourself in a positive way. (My take guys) I'm fortunate in that I have a wonderful DC that has a secondary degree in nutrition, and is helping me along the way. She has introduced to a wonderful Program--THE SCHWARZBEIN PROTOCOL-- that is helping me get my adrenals back into sync, and in time, we'll get some healing going on. I already feel better with just the few changes I've made. The book is written by an Endocrinolgist, and is wonderful. It makes more sense to me than all the rest. It sounds like it would be good for your MD's to check your spinal fluid, and see what kinds of proteins are messing with you. TNF-a and TNF-b studies would also be a good idea. These are blood tests- but if your TNF-a is high, then you know it's active auto-immune. I don't know that TNF-a is high in MS-- but it's really common in us! So Imuran didn't work-- have they tried Methotrexate, Plaquenil or Arava? You take on one at a time, so if you do have side effects, we know what causes the problem. MTX and Plaquenil are a good combo for many of us, and if you have liver problems, you can do MTX injections and bypass the liver. Take Milk Thistle also-- along with Folic Acid, and you can help avoid liver and anemia problems. Terri, I am glad you posted, and that you shared what is going on. And yeah, I'm even glad I asked! My heart goes out to all of us, Hugs, Tracie NS Co-owner/moderator Traci,My first LP 8 years ago showed oligliclonal bands. All the rest havebeen normal. My MRI's are all negative but they have not done theL-spine and below. I have problems with mutlicranial neuropathy,neurogenic bladder, neuropathy (mostly in my feet) and spasms (mostly inmy legs). Those are the main issues and everything progresses when I amnot treated. Prednisone caused myopathy in the thigh muscles and Imurancaused a white count of 1.2 and my LFT's were increasing. I need tostart taking my vitamin D q 2 weeks because when I went to monthly itwent down by 1/2 (currently 13). I have been told I am crazy, I have MSand that I have NS. The NS comes from s Hopkins and long ago I wentto the Medical College of Virginia and he suggested NS. So that itwhere I stand.You asked! Hee hee. Of course there are all kinds of other strangethings but I think I have said enough. Thanks for the prayers andsupport. I have been having a big pity party and it is time I get overit.Love to all.Terri>>>> In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time,> mosaicgirl1@ ... writes:>> I just have not felt like my perky self lately so it was best> just to not post.>> Terri,> It is when we aren't our "perky" self, that we need most ot post. It'sok> to reach out when we are feeling vulnerable. It's ok to say-- "guys, Ineed> some support here." I know that it's scary when we don't have a firm> diagnosis-- but sick is sick-- and that is what we have in common. Youdon't always> have to lift others up-- heck. we support the "unperky" also!>> Hugs,> Tracie>> PS. I pray that you will get that dx next week, and know how toproceed> from there. Have they done a spinal tap to see if you have the proteinbands> that show up with MS??>>>> ************ **The year's hottest artists on the red carpet at theGrammy> Awards. Go to AOL Music.> (http://music. aol.com/grammys? NCID=aolcmp00300 000002565)> Delicious ideas to please the pickiest eaters. Watch the video on AOL Living. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Hi Terri, I have been going thru the same thing myself . I have had two specialists that have been treating me in my area, that have sent me to some specialists at the best hospitals in Boston (an hour away) because they have felt that they have done all they could for me. It takes a lot of time and patience waiting for these new drs. to see me- at least in my case. Sometimes I have been in the position where these drs refer you to other specialists and you have to wait again. I know if you have been lurking , you must be feeling really awful. I hope this new dr can help you and you start feeling better. Take care, Debbie T. Co-Moderator mosaicgirl1 wrote: Hi all,Just a quick hello - hope everyone is as well as they can be. I havebeen lurking but not posting. I just feel like being quiet right now. Just know you are all on my mind and in my prayers. I am off to sHopkins again next week to look for help. My neurologist here can'thelp me with treatment anymore; he has done all he is comfortable doing.Take care and I will let you know what is going on later.Terri G.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php Message 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 February 18, 2008 Report Share Posted February 18, 2008 Marla, Thanks, I am the kind that was raised to pull myself up by my bootstraps and not let anyone help me. That doesn't get me very far though. I will check in after JH on Wednesday. I am having a bell's and trigeminal neuralgia attack so it is beddy bye for me. Terri. G I thought I was the only one whose hair is falling out! > > > > > > > > > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > > > mosaicgirl1@ writes: > > > > > > I just have not felt like my perky self lately so it was best > > > just to not post. > > > > > > Terri, > > > It is when we aren't our " perky " self, that we need most ot post. It's > > ok > > > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I > > need > > > some support here. " I know that it's scary when we don't have a firm > > > diagnosis-- but sick is sick-- and that is what we have in common. You > > don't always > > > have to lift others up-- heck. we support the " unperky " also! > > > > > > Hugs, > > > Tracie > > > > > > PS. I pray that you will get that dx next week, and know how to > > proceed > > > from there. Have they done a spinal tap to see if you have the protein > > bands > > > that show up with MS?? > > > > > > > > > > > > **************The year's hottest artists on the red carpet at the > > Grammy > > > Awards. Go to AOL Music. > > > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > > > > > > > > > > > > > -- > Marla Bramer > Independent Beauty Consultant > Kay > > mbramer@... > www.marykay.com/mbramer > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 , Thanks for the encouragement. I should be ashamed of myself; you and others have it so much worse than I do. Thank you for the prayers. I need them right now. Terri G. > > > > > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > > mosaicgirl1@ writes: > > > > I just have not felt like my perky self lately so it was best > > just to not post. > > > > Terri, > > It is when we aren't our " perky " self, that we need most ot post. It's > ok > > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I > need > > some support here. " I know that it's scary when we don't have a firm > > diagnosis-- but sick is sick-- and that is what we have in common. You > don't always > > have to lift others up-- heck. we support the " unperky " also! > > > > Hugs, > > Tracie > > > > PS. I pray that you will get that dx next week, and know how to > proceed > > from there. Have they done a spinal tap to see if you have the protein > bands > > that show up with MS?? > > > > > > > > **************The year's hottest artists on the red carpet at the > Grammy > > Awards. Go to AOL Music. > > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > > > > > > > > > S. 29:11, For I know the plans I have for you, " declares the > Lord, " plans to prosper you and not to harm you, plans to give you hope > and a future. > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 , Thanks for the info. I am have not been given any other medication options; that is why I am going to Hopkins. I have been looking at nutrition/supplement info but right now I have just given in to the temptations. it feels like that is the only fun I have right now is eating. I know, it is not the best thing but I need a little diversion right now. As in my earliest post, I have bells and TN today so I am heading off to nap. Take care and I will check in after I get back from Hopkins. Terri > > > > > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > > mosaicgirl1@ mosaicgirl1@<W > > > > I just have not felt like my perky self lately so it was best > > just to not post. > > > > Terri, > > It is when we aren't our " perky " self, that we need most ot post. It's > ok > > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I > need > > some support here. " I know that it's scary when we don't have a firm > > diagnosis-- but sick is sick-- and that is what we have in common. You > don't always > > have to lift others up-- heck. we support the " unperky " also! > > > > Hugs, > > Tracie > > > > PS. I pray that you will get that dx next week, and know how to > proceed > > from there. Have they done a spinal tap to see if you have the protein > bands > > that show up with MS?? > > > > > > > > ************ ************<WBR>**The year's hottest artists on the > Grammy > > Awards. Go to AOL Music. > > (_http://music.http://music.<WBhttp://music.<WBhttp://mu_ > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) ) > > > > > > > > > > **************Ideas to please picky eaters. Watch video on AOL Living. > (http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campo\ s-duffy/ > 2050827?NCID=aolcmp00300000002598) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Debbie, I am going to be seeing Dr. in Neurology. I have seen him twice before. He is an MS specialist but he also specializes in neurological immunology. He is the 2nd person to suggest Sarcoid. The first was Dr. Felton at MCV but that was pretty early in the game and everyone ignored his report. I am praying that Dr. will have some help for me because my docs here can't do anything else because they don't know what to do. Take care of yourself and I will check in later; my pain pill is finally kicking in. Terri G. > > Hi all, > > Just a quick hello - hope everyone is as well as they can be. I have > been lurking but not posting. I just feel like being quiet right now. > Just know you are all on my mind and in my prayers. I am off to s > Hopkins again next week to look for help. My neurologist here can't > help me with treatment anymore; he has done all he is comfortable doing. > > Take care and I will let you know what is going on later. > > Terri G. > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members 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 February 19, 2008 Report Share Posted February 19, 2008 Terri, I'm sorry you are suffering with the bells palsy and TN, I know neither is fun, I've heard the TN is very painful, so be good to yourself, thinking of you, Marl a Marla, Thanks, I am the kind that was raised to pull myself up by my bootstraps and not let anyone help me. That doesn't get me very far though. I will check in after JH on Wednesday. I am having a bell's and trigeminal neuralgia attack so it is beddy bye for me. Terri. G I thought I was the only one whose hair is falling out! > > > > > > > > > > > > In a message dated 2/15/2008 1:24:27 P.M. Pacific Standard Time, > > > mosaicgirl1@ writes: > > > > > > I just have not felt like my perky self lately so it was best > > > just to not post. > > > > > > Terri, > > > It is when we aren't our " perky " self, that we need most ot post. It's > > ok > > > to reach out when we are feeling vulnerable. It's ok to say-- " guys, I > > need > > > some support here. " I know that it's scary when we don't have a firm > > > diagnosis-- but sick is sick-- and that is what we have in common. You > > don't always > > > have to lift others up-- heck. we support the " unperky " also! > > > > > > Hugs, > > > Tracie > > > > > > PS. I pray that you will get that dx next week, and know how to > > proceed > > > from there. Have they done a spinal tap to see if you have the protein > > bands > > > that show up with MS?? > > > > > > > > > > > > **************The year's hottest artists on the red carpet at the > > Grammy > > > Awards. Go to AOL Music. > > > (http://music.aol.com/grammys?NCID=aolcmp00300000002565) > > > > > > > > > > > > > -- > Marla Bramer > Independent Beauty Consultant > Kay > > mbramer@... > www.marykay.com/mbramer > -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 congrats terri on a dx, i'm sure your glad they finally want to put a name to your illness. I hope they get decided what meds they want to use soon. many hugs and blessings and a pain free day Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 congrats terri on a dx, i'm sure your glad they finally want to put a name to your illness. I hope they get decided what meds they want to use soon. many hugs and blessings and a pain free day Need a new ride? Check out the largest site for U.S. used car listings at AOL Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2008 Report Share Posted April 17, 2008 Hey Guys, I thought I would tell you what has been happening since my s Hopkins visit. My neuro here does not have any experience with any of the drugs that we discuss on this site, so it was decided that my rheumy would be the go to guy since he is experienced with immunosuppression meds. When I spoke with him this am, he spoke with neuro at s Hopkins and was waiting to speak to the neuro here so it could be decided which tests I might need prior to starting any kind of treatment. They are supposed to talk today. My excited news si that I am actually going to have a treatment plan. Up until this point, my symptoms were treated but we were just flying by the seat of our pants. My rheumy is going to use CNS lupus as the diagnosis so all drugs he wants to try will be covered - that is unless MRI/MRA testing actually shows a lesion. This is the best news I have had in a long time. I know that it might take a trial of different meds before finding one that works for me, but 10 years after the fact, that someone is finally going to do something about what is going on. Thanks to all of my wonderful neurosarc family members - I love all of you. Take care and as soon as the drug of choice is decided, I will let you know. Love, Terri G. Quote Link to comment Share on other sites More sharing options...
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