Guest guest Posted October 13, 2003 Report Share Posted October 13, 2003 Glenda, I was told I have NeuroSarc. I was told I probably have a lesion in the brainstem where the nerves cross over. I had an inconclusive MRI, my doc said “it could be to small to see, but the symptoms told him where the lesion is, or so he thinks. I have had many strange symptoms. I have left side Neuropathic pain, my left foot the outside and the little toe burn most of the time, which sends these burning type pain up the leg. I have some of the same pain in the left hip. The left side of my face remains numb all the time, but I get the trigieniaml pain from time to time. I have transient paralysis on that side. I started 9 years ago in my lungs, pred. remission. Next episode worse, pred. remission. Next worse, pred didn’t work so hot, and made me crazy, each time I’ve had to take it the side effects and the psychosis get worse, not I have a love/hate relationship with the drug. I am on 1 mg/daily, and only have a week left and I’m off. I have been weaning off the pred. 1mg/month for some time now. Each episode got worse! I now have pulmonary and systemic/skin involvement taking plaquanil for that. Now with the neurosarc, I am on. Methotrexare, plaquanil, neurontin, nortriptyline, ativan and effexor, and vicodin for the pain, which barely touches it, but takes the edge off. I tried duragisic patch, got N & V x 10 hours. Saw a pain clinic doc, suggested a nerve block, but that has a 50/50 chance since this is neuropathic. Just quit nusing after 27 years, to see if the stress of that will help this monster to settle down?? (I loved my job, and feel a little empty inside). Oh ya I’m getting Sarc in my joints, my “get this” my Right little finger, and now my left middle finger. Skin lesions everywhere!!! I am on the computer now because my arm started burning from the lesions, and had to get up and rub lotion all over my arm. ( I did however, find a great lotion, that helps with the burning sensation of the lesions) it is, of course, Kay visibly fit body lotion, which is suppose to be awesome for things like stretch marks, spider veins, helps break down adipose (fat) tissue. I have seen it do all those things, and found out in desperation that it also works on my sarc lesions. So I started plum, went to systemic, skin, neuro. I had trouble with my ears like I was in a tunnel and that came and went, drove me crazy. I would get lost, especially while driving, and sometimes just coming out of a patient’s room, I would forget where the nurse’s station was? Scary! I had what I called brain fog. The mextho helped my brain fog and the hearing thing a lot. But seem to have chronic pain now, every day my left foot hurts, and sometimes the left thigh too. Ok enough, now you know the “whole story”. Glenda I’m curious, did you ever work in a hospital? I’m glad you are doing ok on the prednisone, I can’t take anything over 20mgs/day anymore and even that is pushing it. Would love to hear from you, sorry to rattle on about me, but I guess I’m feeling a little empty tonight, have since I quit the hospital on Thursday, Rose knows what I mean, don’t ya girlfriend? Anyway, that’s enough to put you to sleep, which is probably why I’m up!! Love and Prayers to all, Marla Re: New to Group % New to Group I'm new to this group and have been reading different emails re neurosarcoidosis. I was dx June 2002 after l 1/2 years of symptoms (biopsy). My brain is the only part of my body effected with granulomas. I am confused with the term neurosarc. Apparently it is not in the brain only but includes the body. Can anyone help me to understand the difference. Would like to hear from brain sarc people also. Thanks, Glenda ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. ~~~~ *** ~~~ *** ~~~ *** ~~~~ 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 ~~~~ *** ~~~ *** ~~~ *** ~~~~ Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hi Irene, I'd say that if you are generally happy with Kaiser, don't switch. I know several people who were initially denied, but appealed the decision, won, and have gone on to have the surgery. And regarding comorbs? The high blood pressure and elevated cholesterol are, or can be, considered comorbs. The back problems can also be considered comorbs if weight related. My only comorb was bad knees. Where are you? I'm in Berkeley. If you're in the area, I can recommend some great support groups. Hang in there and don't give up before you've really begun! Eleanor idharrington wrote: > Hi everyone. I have been reading many of the messages on this site > and I feel like I know all of you already. > My name is Irene and I am just starting out on this journey of > gastric bypass surgery. I was so excited to get my notice to go to > the very first meeting that I was floating. Do you know how hard > that is at my weight. Having been with Kaiser for many years and > having a few surgeries I didn't think this process would be any > different other than meeting with a Phy. and a Dietitian. Boy was I > wrong. I didn't know, first, that it would take so long to get a > surgery date, nor did I know you had to go through so many hoops to > get one. I know that it will be worth it at the end, and I really > don't mind the wait - this was just an eye opener. I am the kind of > person that needs to be mentally ready for any kind of " procedure " > done to me that will cause pain - that includes going to the dentist > or looking at a needle. Just a baby at heart....but this is > something I truely have wanted for some time now. > Reading alot of the messages, I am concerned that I may not even be > approved with Kaiser to go to the next step. I am 52 years old and > do not have any of the co-morbs. I am on the border line of high > blood pressure, have elevated cholesteral but relatevily in good > health - other than being obese. I do have a back problems and other > things that are anoying, but I have just learned to live with it. I > guess I got tired of going to my doctor in the early days with > problems and all they would say is to loose weight - so my thinking > now is why bother going in with problems when I know what they are > going to say... My BMI (at last count) was 42. So you see, based on > Kaiser's criteria, I will probably be denied - but then I think why > would my doctor refer me for this surgery if I didn't meet some > criteria...??? I do meet the NIH guidelines but not Kaiser's > guidelines it sounds like. > Since it is open enrollment for changing plans, I could change > coverages and go with Blue Shield. I have had Kaiser so long that it > scares me to move to the unknown. How do I know that I will get a > doctor that is in favor of gastric bypass surgery. I now have a > wonderful doctor with Kaiser and she is very supportive of my > decision for this surgery. > Well enough of this - just very nervious that I will be stopped > before I even begin...Thanks for listening.... -- Eleanor Oster eleanor@... (personal address) www.smallboxes.com/gastricbypass.htm Berkeley, CA Open RNY (100 cm bypassed) 07/15/2003 Kaiser Richmond (CA) P. Fisher, M.D. Start (05/09/2003-Orientation) 319 / Current ~245 / Goal 150 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hi Irene, When is your meeting? Is it an orientation meeting for the Bariatrics Program? I'm certainly no expert on the ins & outs of Kaiser's routine, but I don't think that they would schedule an orientation meeting unless you were approved. I hope all goes well for you. I think that you are wise to pursue this before you are faced with all sorts of co-morbities. Take care, Kay idharrington wrote: Hi everyone. I have been reading many of the messages on this site and I feel like I know all of you already. My name is Irene and I am just starting out on this journey of gastric bypass surgery. I was so excited to get my notice to go to the very first meeting that I was floating. Do you know how hard that is at my weight. Having been with Kaiser for many years and having a few surgeries I didn't think this process would be any different other than meeting with a Phy. and a Dietitian. Boy was I wrong. I didn't know, first, that it would take so long to get a surgery date, nor did I know you had to go through so many hoops to get one. I know that it will be worth it at the end, and I really don't mind the wait - this was just an eye opener. I am the kind of person that needs to be mentally ready for any kind of "procedure" done to me that will cause pain - that includes going to the dentist or looking at a needle. Just a baby at heart....but this is something I truely have wanted for some time now. Reading alot of the messages, I am concerned that I may not even be approved with Kaiser to go to the next step. I am 52 years old and do not have any of the co-morbs. I am on the border line of high blood pressure, have elevated cholesteral but relatevily in good health - other than being obese. I do have a back problems and other things that are anoying, but I have just learned to live with it. I guess I got tired of going to my doctor in the early days with problems and all they would say is to loose weight - so my thinking now is why bother going in with problems when I know what they are going to say... My BMI (at last count) was 42. So you see, based on Kaiser's criteria, I will probably be denied - but then I think why would my doctor refer me for this surgery if I didn't meet some criteria...??? I do meet the NIH guidelines but not Kaiser's guidelines it sounds like. Since it is open enrollment for changing plans, I could change coverages and go with Blue Shield. I have had Kaiser so long that it scares me to move to the unknown. How do I know that I will get a doctor that is in favor of gastric bypass surgery. I now have a wonderful doctor with Kaiser and she is very supportive of my decision for this surgery. Well enough of this - just very nervious that I will be stopped before I even begin...Thanks for listening.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Diane: Welcome to the group! You'll find us a great group of people- -someone is always willing to tackle any question, and the advice is always great. At least that's been my experience in my few weeks as a member. I have a question for you. Did you receive your referral recently? I expect to get mine on April 24th (am having the Kaiser labs and scans done prior to that), but my PCP is suggesting that Kaiser is now sending people to UCLA. I much prefer Scripps and their surgical team, so I'd love to be able to report on someone from Sacramento being sent to Scripps! You will drive past UCLA on your way! (I live in Orange County about half-way between UCLA and Scripps.) Thanks! Pat Pre-Op >I will be going to San Diego from Modesto for the surgery at >Scripps Hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Diane: Welcome to the group! You'll find us a great group of people- -someone is always willing to tackle any question, and the advice is always great. At least that's been my experience in my few weeks as a member. I have a question for you. Did you receive your referral recently? I expect to get mine on April 24th (am having the Kaiser labs and scans done prior to that), but my PCP is suggesting that Kaiser is now sending people to UCLA. I much prefer Scripps and their surgical team, so I'd love to be able to report on someone from Sacramento being sent to Scripps! You will drive past UCLA on your way! (I live in Orange County about half-way between UCLA and Scripps.) Thanks! Pat Pre-Op >I will be going to San Diego from Modesto for the surgery at >Scripps Hospital. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Welcome, Diane! I am glad that the nice woman is here. If we pool all our knowledge, then this group knows just about everything about gastric bypass, before and after. Everyone is willing to share experiences and advice, and we grow very fond of each other along the way. Hope you have a great experience here! Elaine Dr. Park Kaiser Richmond 5-19-03 (almost a year!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Welcome, Diane! I am glad that the nice woman is here. If we pool all our knowledge, then this group knows just about everything about gastric bypass, before and after. Everyone is willing to share experiences and advice, and we grow very fond of each other along the way. Hope you have a great experience here! Elaine Dr. Park Kaiser Richmond 5-19-03 (almost a year!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi Elaine, Thank you for the welcome! I am looking forward to finally have the surgery done. I have gone to three seminars in the past two years. I had hoped to have it done here in Modesto with my Medicare paying 80 percent and me the rest but I was told I didn't meet the minimum requirements which shocked me since I have alot wrong with me (healthwise) Luckily I also have Kaiser so am back to going with that. Now will be attending my fourth seminar second one with Scripps next month. Take care Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi Elaine, Thank you for the welcome! I am looking forward to finally have the surgery done. I have gone to three seminars in the past two years. I had hoped to have it done here in Modesto with my Medicare paying 80 percent and me the rest but I was told I didn't meet the minimum requirements which shocked me since I have alot wrong with me (healthwise) Luckily I also have Kaiser so am back to going with that. Now will be attending my fourth seminar second one with Scripps next month. Take care Diane Quote Link to comment Share on other sites More sharing options...
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