Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi, Wilma! This is a great place to get your questions answered - I find it tremendously helpful, and I've recommended it to a lot of others as well. Something you need to be aware of that I only found out after being here a while is the length of time it will probably take once you make the decision to pursue the surgery. There are a lot of steps to go through along the way; a year is not at all uncommon. I told my doctor in July that I was interested in WLS; I had a couple of preliminary appointments in August/September (nutritionist and psych.) and then she referred me to the program. I got my acceptance letter in November. I'm still waiting for my appointment for Orientation, and from THAT point it will probably be a number of months till surgery IF I keep on track and lose the prerequisite weight without too much trouble. However, I'm motivated and revved-up, and this group helps keep me that way. I really believe that keeping in regular contact with everyone here is a key to success - I need to surround myself with positive role models, and the folks here are some of the best I've found. Cathy C. > > Hi everybody, > I'm considering the surgery in the not too distant future. I was > wondering if I could attend the support group in richmond even though I > haven't had the surgery? Is there pre-registration for the support > group or do you just show up? I have so many questions about the > process. I am glad I was referred to this site because I know all of > you understand what I am going thru. It's hard living in this society > and being looked at as a freak because your're obese. I would be happy > to receive any and all suggestions from all of you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi Cathy! I think it all depends on which Kaiser you are going through as to how much time it will take to get through the process. I went through Richmond. I talked to my PCP in ez in the end of April. I was approved 5/5/05 and had orientation 7/5/05 and surgery 12/12/05. It did take about a month from when I reached my 10% to get a surgery date, but I've heard of people in Fremont and SSF with much much longer waits than that. Best of luck to you! Barbara (LTLJSMOM) Dr. Fisher 12/12/05 Orientation: 284.5 Surgery: 250 Today: 223..ish Goal: 125-130 From: Cathy Sent: Monday, January 09, 2006 4:02 PMTo: gastric-bypass-support-kaiser-patients Subject: Re: new member Hi, Wilma!This is a great place to get your questions answered - I find it tremendously helpful, and I've recommended it to a lot of others as well. Something you need to be aware of that I only found out after being here a while is the length of time it will probably take once you make the decision to pursue the surgery. There are a lot of steps to go through along the way; a year is not at all uncommon. I told my doctor in July that I was interested in WLS; I had a couple of preliminary appointments in August/September (nutritionist and psych.) and then she referred me to the program. I got my acceptance letter in November. I'm still waiting for my appointment for Orientation, and from THAT point it will probably be a number of months till surgery IF I keep on track and lose the prerequisite weight without too much trouble.However, I'm motivated and revved-up, and this group helps keep me that way. I really believe that keeping in regular contact with everyone here is a key to success - I need to surround myself with positive role models, and the folks here are some of the best I've found.Cathy C.>> Hi everybody,> I'm considering the surgery in the not too distant future. I was > wondering if I could attend the support group in richmond even though I > haven't had the surgery? Is there pre-registration for the support > group or do you just show up? I have so many questions about the > process. I am glad I was referred to this site because I know all of > you understand what I am going thru. It's hard living in this society > and being looked at as a freak because your're obese. I would be happy > to receive any and all suggestions from all of you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Barbara I was approved 10/04, orientation11/16/04 and could of had surgery in Feb. of 05, decided to wait until April 11/05 because I had to relocate my daycare children since I was closing while out for surgery. So for me Richmond was very fast. Take care. Donna"Hokoana, Barbara" wrote: Hi Cathy! I think it all depends on which Kaiser you are going through as to how much time it will take to get through the process. I went through Richmond. I talked to my PCP in ez in the end of April. I was approved 5/5/05 and had orientation 7/5/05 and surgery 12/12/05. It did take about a month from when I reached my 10% to get a surgery date, but I've heard of people in Fremont and SSF with much much longer waits than that. Best of luck to you! Barbara (LTLJSMOM) Dr. Fisher 12/12/05 Orientation: 284.5 Surgery: 250 Today: 223..ish Goal: 125-130 From: Cathy Sent: Monday, January 09, 2006 4:02 PMTo: gastric-bypass-support-kaiser-patients Subject: Re: new member Hi, Wilma!This is a great place to get your questions answered - I find it tremendously helpful, and I've recommended it to a lot of others as well. Something you need to be aware of that I only found out after being here a while is the length of time it will probably take once you make the decision to pursue the surgery. There are a lot of steps to go through along the way; a year is not at all uncommon. I told my doctor in July that I was interested in WLS; I had a couple of preliminary appointments in August/September (nutritionist and psych.) and then she referred me to the program. I got my acceptance letter in November. I'm still waiting for my appointment for Orientation, and from THAT point it will probably be a number of months till surgery IF I keep on track and lose the prerequisite weight without too much trouble.However, I'm motivated and revved-up, and this group helps keep me that way. I really believe that keeping in regular contact with everyone here is a key to success - I need to surround myself with positive role models, and the folks here are some of the best I've found.Cathy C.>> Hi everybody,> I'm considering the surgery in the not too distant future. I was > wondering if I could attend the support group in richmond even though I > haven't had the surgery? Is there pre-registration for the support > group or do you just show up? I have so many questions about the > process. I am glad I was referred to this site because I know all of > you understand what I am going thru. It's hard living in this society > and being looked at as a freak because your're obese. I would be happy > to receive any and all suggestions from all of you.> Donna JordonDSJordon@... Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Barbara I was approved 10/04, orientation11/16/04 and could of had surgery in Feb. of 05, decided to wait until April 11/05 because I had to relocate my daycare children since I was closing while out for surgery. So for me Richmond was very fast. Take care. Donna"Hokoana, Barbara" wrote: Hi Cathy! I think it all depends on which Kaiser you are going through as to how much time it will take to get through the process. I went through Richmond. I talked to my PCP in ez in the end of April. I was approved 5/5/05 and had orientation 7/5/05 and surgery 12/12/05. It did take about a month from when I reached my 10% to get a surgery date, but I've heard of people in Fremont and SSF with much much longer waits than that. Best of luck to you! Barbara (LTLJSMOM) Dr. Fisher 12/12/05 Orientation: 284.5 Surgery: 250 Today: 223..ish Goal: 125-130 From: Cathy Sent: Monday, January 09, 2006 4:02 PMTo: gastric-bypass-support-kaiser-patients Subject: Re: new member Hi, Wilma!This is a great place to get your questions answered - I find it tremendously helpful, and I've recommended it to a lot of others as well. Something you need to be aware of that I only found out after being here a while is the length of time it will probably take once you make the decision to pursue the surgery. There are a lot of steps to go through along the way; a year is not at all uncommon. I told my doctor in July that I was interested in WLS; I had a couple of preliminary appointments in August/September (nutritionist and psych.) and then she referred me to the program. I got my acceptance letter in November. I'm still waiting for my appointment for Orientation, and from THAT point it will probably be a number of months till surgery IF I keep on track and lose the prerequisite weight without too much trouble.However, I'm motivated and revved-up, and this group helps keep me that way. I really believe that keeping in regular contact with everyone here is a key to success - I need to surround myself with positive role models, and the folks here are some of the best I've found.Cathy C.>> Hi everybody,> I'm considering the surgery in the not too distant future. I was > wondering if I could attend the support group in richmond even though I > haven't had the surgery? Is there pre-registration for the support > group or do you just show up? I have so many questions about the > process. I am glad I was referred to this site because I know all of > you understand what I am going thru. It's hard living in this society > and being looked at as a freak because your're obese. I would be happy > to receive any and all suggestions from all of you.> Donna JordonDSJordon@... Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 , welcome! My name is Ron and I'm in Napa. Congrats on getting started on your weight loss journey. Here, you'll find people in all stages of the program from just getting info to 3+ years post op and anywhere in between. You'l find that there are several differences in the programs from one Kaiser to another, but the end result is the same. A tool that we can all use to get to and stay at a normal weight for the rest of our lives. Whatever questions you have, don't feel bad about asking. If you don't know, you should ask. There are so many good hearted people here and I'm sure you'll feel right at home. Ron New Member Hi my name is and I am new here this afternoon. I am a Southern California Kaiser member in Bakersfield California. I have just started the 24 week mandatory classes for bariatric surgery and have 23 more to go. It seems like this will take forever but I don't mind at least I will be even more educated then I am already. I am a single Mom of 2 and Mom to 1 deceased son. My Everett passed away 3 years ago at the age of 20. That had nothing to do with my weight I have been overweight all my life. I also have 7 beautiful grand little people. I am so excited with this new chapter of my life and so willing to do what ever it takes to move on. Thanks for having me here: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 , welcome! My name is Ron and I'm in Napa. Congrats on getting started on your weight loss journey. Here, you'll find people in all stages of the program from just getting info to 3+ years post op and anywhere in between. You'l find that there are several differences in the programs from one Kaiser to another, but the end result is the same. A tool that we can all use to get to and stay at a normal weight for the rest of our lives. Whatever questions you have, don't feel bad about asking. If you don't know, you should ask. There are so many good hearted people here and I'm sure you'll feel right at home. Ron New Member Hi my name is and I am new here this afternoon. I am a Southern California Kaiser member in Bakersfield California. I have just started the 24 week mandatory classes for bariatric surgery and have 23 more to go. It seems like this will take forever but I don't mind at least I will be even more educated then I am already. I am a single Mom of 2 and Mom to 1 deceased son. My Everett passed away 3 years ago at the age of 20. That had nothing to do with my weight I have been overweight all my life. I also have 7 beautiful grand little people. I am so excited with this new chapter of my life and so willing to do what ever it takes to move on. Thanks for having me here: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Welcome to our group .Glad to have you here. Ramona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Welcome to our group .Glad to have you here. Ramona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Hi - My sisters name is and half of my life growing up they called me LOL Welcome to the group and to your decesion to have surgery ! Education is always good, and I am happy for you, i can feel your excitement to get started in the process. Hope to hear updates from you ! I am almost one year post op, and am so glad I did the surgery, wish i could of done it years ago ( i will be 50 in nov) Good to meet you Colleen wrote: Hi my name is and I am new here this afternoon. I am a Southern California Kaiser member in Bakersfield California. I have just started the 24 week mandatory classes for bariatric surgery and have 23 more to go. It seems like this will take forever but I don't mind at least I will be even more educated then I am already. I am a single Mom of 2 and Mom to 1 deceased son. My Everett passed away 3 years ago at the age of 20. That had nothing to do with my weight I have been overweight all my life. I also have 7 beautiful grand little people. I am so excited with this new chapter of my life and so willing to do what ever it takes to move on. Thanks for having me here: Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 Hi - My sisters name is and half of my life growing up they called me LOL Welcome to the group and to your decesion to have surgery ! Education is always good, and I am happy for you, i can feel your excitement to get started in the process. Hope to hear updates from you ! I am almost one year post op, and am so glad I did the surgery, wish i could of done it years ago ( i will be 50 in nov) Good to meet you Colleen wrote: Hi my name is and I am new here this afternoon. I am a Southern California Kaiser member in Bakersfield California. I have just started the 24 week mandatory classes for bariatric surgery and have 23 more to go. It seems like this will take forever but I don't mind at least I will be even more educated then I am already. I am a single Mom of 2 and Mom to 1 deceased son. My Everett passed away 3 years ago at the age of 20. That had nothing to do with my weight I have been overweight all my life. I also have 7 beautiful grand little people. I am so excited with this new chapter of my life and so willing to do what ever it takes to move on. Thanks for having me here: Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Welcome to our group, you will learn a lot and have many people support you through your journey. Sorry for the loose of your son. Take care. Donna wrote: Hi my name is and I am new here this afternoon. I am a Southern California Kaiser member in Bakersfield California. I have just started the 24 week mandatory classes for bariatric surgery and have 23 more to go. It seems like this will take forever but I don't mind at least I will be even more educated then I am already. I am a single Mom of 2 and Mom to 1 deceased son. My Everett passed away 3 years ago at the age of 20. That had nothing to do with my weight I have been overweight all my life. I also have 7 beautiful grand little people. I am so excited with this new chapter of my life and so willing to do what ever it takes to move on. Thanks for having me here: Donna JordonDSJordon@... Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2006 Report Share Posted January 30, 2006 Welcome to our group, you will learn a lot and have many people support you through your journey. Sorry for the loose of your son. Take care. Donna wrote: Hi my name is and I am new here this afternoon. I am a Southern California Kaiser member in Bakersfield California. I have just started the 24 week mandatory classes for bariatric surgery and have 23 more to go. It seems like this will take forever but I don't mind at least I will be even more educated then I am already. I am a single Mom of 2 and Mom to 1 deceased son. My Everett passed away 3 years ago at the age of 20. That had nothing to do with my weight I have been overweight all my life. I also have 7 beautiful grand little people. I am so excited with this new chapter of my life and so willing to do what ever it takes to move on. Thanks for having me here: Donna JordonDSJordon@... Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 HI Kathy, NS is scary, but it is a slow progressing disease. I suspect that once you get the solu-medrol much of that numbness will subside. Since you don't know yet what is going on- you said they've tested you for MS-- I suspect they did the lumbar puncture? That would tell them if you have a particular band of proteins that are positive for MS. The good news is that MS can be controlled for the most part. For sarc, they don't know what causes it or what to do with us-- so we are the guinea pigs here. Since you have some kind of lesion on the spine-- they may want to actually biopsy it-- and that could be a good thing-- they'd send you to a neurosurgeon to do that. Have they taken any chest xrays, as most (80%) of sarc happens in the lungs, then if it goes throughout the body, it can become very systemic. I truly hope you don't have it. It's the exhaustion and fatigue that I think are the hardest to deal with- we don't like to be slowed down. Have they even mentioned sarcoidosis? Many of the auto-immune diseases have the same symptoms, so what they do is rule out all the others, and then they come to this. I'm sure that whatever it is that is putting pressure on your spine is what is causing the numbness- so you probably have some nerve impingement. AGain, once they get the inflamation down, hopefully the problem resolves. Let us know, and we wish you the best on Thurs. Sincerely, Tracie NS Co-owner/moderator New member Hi EveryoneThis is rather scary. Reading what some of you are going through. I wish you all the best. My name is Kathy....I havent been formally diagnosed with this disorder but have been told as I was getting tests " How long have you had sarcoidosis. I knew a woman that had it a couple years ago. I started researching....and since i had to wait 2 mos for an appt with a specialist I had plenty of time to research. My neurologist tells me to wait and see the specialist. When I call for an update on my tests I was told the Dr already gave you the results that he was going to give you. They just expect me to wait until i see the specialist. Well, the wait is almost over. I go thurs. i was told i had a lesion in my spinal cord and was tested for MS. My dr called me and said it's possible i could develope ms in next 5 yrs but he'll just call it an inflamation of the spinal cord he sd just go on with your life and maybe it will go away. I callled him when my right hand started tingling and my toes started going numb and he set me up with intervenous solu medrol treatments for 3 days. My left hand and arm are numb and getting stiff. some of my fingers arent wrkg very well, my legs are numb and sensations are off in my feet so i lose my balance at times. i could go on but won't. So if anyone has any words of encouragement.... or can anyone tell me if this specialist will be doing any tests or am i going just to hear the gourry details. I am getting nervous the closer it gets.My prayers will be with the group! Thanks for listeningKathy Get the MapQuest Toolbar, Maps, Traffic, Directions & More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2008 Report Share Posted April 22, 2008 HI Kathy, NS is scary, but it is a slow progressing disease. I suspect that once you get the solu-medrol much of that numbness will subside. Since you don't know yet what is going on- you said they've tested you for MS-- I suspect they did the lumbar puncture? That would tell them if you have a particular band of proteins that are positive for MS. The good news is that MS can be controlled for the most part. For sarc, they don't know what causes it or what to do with us-- so we are the guinea pigs here. Since you have some kind of lesion on the spine-- they may want to actually biopsy it-- and that could be a good thing-- they'd send you to a neurosurgeon to do that. Have they taken any chest xrays, as most (80%) of sarc happens in the lungs, then if it goes throughout the body, it can become very systemic. I truly hope you don't have it. It's the exhaustion and fatigue that I think are the hardest to deal with- we don't like to be slowed down. Have they even mentioned sarcoidosis? Many of the auto-immune diseases have the same symptoms, so what they do is rule out all the others, and then they come to this. I'm sure that whatever it is that is putting pressure on your spine is what is causing the numbness- so you probably have some nerve impingement. AGain, once they get the inflamation down, hopefully the problem resolves. Let us know, and we wish you the best on Thurs. Sincerely, Tracie NS Co-owner/moderator New member Hi EveryoneThis is rather scary. Reading what some of you are going through. I wish you all the best. My name is Kathy....I havent been formally diagnosed with this disorder but have been told as I was getting tests " How long have you had sarcoidosis. I knew a woman that had it a couple years ago. I started researching....and since i had to wait 2 mos for an appt with a specialist I had plenty of time to research. My neurologist tells me to wait and see the specialist. When I call for an update on my tests I was told the Dr already gave you the results that he was going to give you. They just expect me to wait until i see the specialist. Well, the wait is almost over. I go thurs. i was told i had a lesion in my spinal cord and was tested for MS. My dr called me and said it's possible i could develope ms in next 5 yrs but he'll just call it an inflamation of the spinal cord he sd just go on with your life and maybe it will go away. I callled him when my right hand started tingling and my toes started going numb and he set me up with intervenous solu medrol treatments for 3 days. My left hand and arm are numb and getting stiff. some of my fingers arent wrkg very well, my legs are numb and sensations are off in my feet so i lose my balance at times. i could go on but won't. So if anyone has any words of encouragement.... or can anyone tell me if this specialist will be doing any tests or am i going just to hear the gourry details. I am getting nervous the closer it gets.My prayers will be with the group! Thanks for listeningKathy Get the MapQuest Toolbar, Maps, Traffic, Directions & More! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Hi kathy, This is and I live in lancaster Pa. and I was dx with NS in 2001, but i was sick since 1995 and went all those years wrongly dx. so its not uncommon to go on what seems forever until they rule out all other possiblitys , than they settle on a dx. I was dx with CNSV first and I do have that secondary to the NS. Its inflamation of the bloodvessles. I was on high dose's of roids for many years than I got toxic and had to go inpatient to get off them. so I found this really good dr and he is now my Neuro dr and treats my NS and CNSV. It took so many tests. My blood calsium was very high , my wbc was VERY high, I have a lesion in the left lobe of my brain, and in my L-adrenal gland. I also had 3 very possitive spinal taps. and an positive angi-gram of the brain. that's what dxd the CNSV. I had a liver biopsy I have the NS in my liver, lungs, spinal cord, brain,L-adrenal gland. I am on Imuran, plaquneil, oxycontin,ES-vicoden for breakthrough pain, tenormin to control my heart rate , without it my heart goes about 178 sleeping. I am also on senimet for the Restless leg syndrom, I am also on xananx and zoloft for anxiety and depression.and Elevil at bedtime for the nerve pain. I suffer daily with head pain,, as you see I don't say headache lol because this is no normal headache. I live with a daily pain level of 7-8 daily. before the Imuran I had a pain of 10 everyday, that required high doses of demerol and morphine to control. So I have inproved. I have arm and leg pain several days a week, and weakness that I can't get out of bed. but... the good news is I am 40 and I will not let this define who I am, I just this past spring returned to college. I go parttime. its a struggle but I will do it. I am SSD. and have been since the fall of 2001. I suffer short term memory loss and cognitive problems. which really inproved with the use of Plaquneil, I and others call brain fog. but trust me I still have it lol but not as often and not as bad. I hope this info helps you.. In paNeed 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 23, 2008 Report Share Posted April 23, 2008 Hi kathy, This is and I live in lancaster Pa. and I was dx with NS in 2001, but i was sick since 1995 and went all those years wrongly dx. so its not uncommon to go on what seems forever until they rule out all other possiblitys , than they settle on a dx. I was dx with CNSV first and I do have that secondary to the NS. Its inflamation of the bloodvessles. I was on high dose's of roids for many years than I got toxic and had to go inpatient to get off them. so I found this really good dr and he is now my Neuro dr and treats my NS and CNSV. It took so many tests. My blood calsium was very high , my wbc was VERY high, I have a lesion in the left lobe of my brain, and in my L-adrenal gland. I also had 3 very possitive spinal taps. and an positive angi-gram of the brain. that's what dxd the CNSV. I had a liver biopsy I have the NS in my liver, lungs, spinal cord, brain,L-adrenal gland. I am on Imuran, plaquneil, oxycontin,ES-vicoden for breakthrough pain, tenormin to control my heart rate , without it my heart goes about 178 sleeping. I am also on senimet for the Restless leg syndrom, I am also on xananx and zoloft for anxiety and depression.and Elevil at bedtime for the nerve pain. I suffer daily with head pain,, as you see I don't say headache lol because this is no normal headache. I live with a daily pain level of 7-8 daily. before the Imuran I had a pain of 10 everyday, that required high doses of demerol and morphine to control. So I have inproved. I have arm and leg pain several days a week, and weakness that I can't get out of bed. but... the good news is I am 40 and I will not let this define who I am, I just this past spring returned to college. I go parttime. its a struggle but I will do it. I am SSD. and have been since the fall of 2001. I suffer short term memory loss and cognitive problems. which really inproved with the use of Plaquneil, I and others call brain fog. but trust me I still have it lol but not as often and not as bad. I hope this info helps you.. In paNeed 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 23, 2008 Report Share Posted April 23, 2008 Hi , I live in New Castle north of pittsburgh. I am 50. Just turned 50 on jan 30 when all my real trouble began. My sons best friends father died of lou gehrigs then my sons best friend died of an accidental overdose of sleeping pills on the 31st. The stress was killing me and i had absolutley no energy. Then i started getting so tired it made me feel like crying and i felt sick all over. I have been dealing with numbness in my left hand that has gotten progressively worse since July. I kept thinking it was from a neck problem i had years ago. but after testing and my legs going numb i asked for an MRI that is when they told me i needed a neurologist. The neurologist saw the lesion right away. I had the spinal tap, actually 2 and chest x rays along with a ton of blood work. I was also very low in b12 and needed shots dailey then wkly now i am just about to start monthly shots. The solu Medrol didnt reverse any numbness really just my toes where it was starting. I have had more energy since my b12 level has improved. I dont know any test results from blood work except b12 i have to wait for spec tomorrow for them. You have been dealing with this for a long time. You must be very strong. keep up the good fight. Do you know if any research is being done on this disorder? I'll be back tomorrow...talk to you then. Kathy > > Hi kathy, > > This is and I live in lancaster Pa. and I was dx with NS in 2001, > but i was sick since 1995 and went all those years wrongly dx. > so its not uncommon to go on what seems forever until they rule out all > other possiblitys , than they settle on a dx. > I was dx with CNSV first and I do have that secondary to the NS. Its > inflamation of the bloodvessles. > I was on high dose's of roids for many years than I got toxic and had to go > inpatient to get off them. so I found this really good dr and he is now my > Neuro dr and treats my NS and CNSV. It took so many tests. My blood calsium was > very high , my wbc was VERY high, I have a lesion in the left lobe of my > brain, and in my L-adrenal gland. I also had 3 very possitive spinal taps. and an > positive angi-gram of the brain. that's what dxd the CNSV. > I had a liver biopsy I have the NS in my liver, lungs, spinal cord, > brain,L-adrenal gland. > I am on Imuran, plaquneil, oxycontin,ES-vicoden for breakthrough pain, > tenormin to control my heart rate , without it my heart goes about 178 sleeping. I > am also on senimet for the Restless leg syndrom, I am also on xananx and > zoloft for anxiety and depression.and Elevil at bedtime for the nerve pain. I > suffer daily with head pain,, as you see I don't say headache lol because this > is no normal headache. I live with a daily pain level of 7-8 daily. before > the Imuran I had a pain of 10 everyday, that required high doses of demerol > and morphine to control. So I have inproved. I have arm and leg pain several > days a week, and weakness that I can't get out of bed. but... the good news is > I am 40 and I will not let this define who I am, I just this past spring > returned to college. I go parttime. its a struggle but I will do it. I am SSD. > and have been since the fall of 2001. > I suffer short term memory loss and cognitive problems. which really > inproved with the use of Plaquneil, I and others call brain fog. but trust me I > still have it lol but not as often and not as bad. > I hope this info helps you.. > In pa > > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Hi , I live in New Castle north of pittsburgh. I am 50. Just turned 50 on jan 30 when all my real trouble began. My sons best friends father died of lou gehrigs then my sons best friend died of an accidental overdose of sleeping pills on the 31st. The stress was killing me and i had absolutley no energy. Then i started getting so tired it made me feel like crying and i felt sick all over. I have been dealing with numbness in my left hand that has gotten progressively worse since July. I kept thinking it was from a neck problem i had years ago. but after testing and my legs going numb i asked for an MRI that is when they told me i needed a neurologist. The neurologist saw the lesion right away. I had the spinal tap, actually 2 and chest x rays along with a ton of blood work. I was also very low in b12 and needed shots dailey then wkly now i am just about to start monthly shots. The solu Medrol didnt reverse any numbness really just my toes where it was starting. I have had more energy since my b12 level has improved. I dont know any test results from blood work except b12 i have to wait for spec tomorrow for them. You have been dealing with this for a long time. You must be very strong. keep up the good fight. Do you know if any research is being done on this disorder? I'll be back tomorrow...talk to you then. Kathy > > Hi kathy, > > This is and I live in lancaster Pa. and I was dx with NS in 2001, > but i was sick since 1995 and went all those years wrongly dx. > so its not uncommon to go on what seems forever until they rule out all > other possiblitys , than they settle on a dx. > I was dx with CNSV first and I do have that secondary to the NS. Its > inflamation of the bloodvessles. > I was on high dose's of roids for many years than I got toxic and had to go > inpatient to get off them. so I found this really good dr and he is now my > Neuro dr and treats my NS and CNSV. It took so many tests. My blood calsium was > very high , my wbc was VERY high, I have a lesion in the left lobe of my > brain, and in my L-adrenal gland. I also had 3 very possitive spinal taps. and an > positive angi-gram of the brain. that's what dxd the CNSV. > I had a liver biopsy I have the NS in my liver, lungs, spinal cord, > brain,L-adrenal gland. > I am on Imuran, plaquneil, oxycontin,ES-vicoden for breakthrough pain, > tenormin to control my heart rate , without it my heart goes about 178 sleeping. I > am also on senimet for the Restless leg syndrom, I am also on xananx and > zoloft for anxiety and depression.and Elevil at bedtime for the nerve pain. I > suffer daily with head pain,, as you see I don't say headache lol because this > is no normal headache. I live with a daily pain level of 7-8 daily. before > the Imuran I had a pain of 10 everyday, that required high doses of demerol > and morphine to control. So I have inproved. I have arm and leg pain several > days a week, and weakness that I can't get out of bed. but... the good news is > I am 40 and I will not let this define who I am, I just this past spring > returned to college. I go parttime. its a struggle but I will do it. I am SSD. > and have been since the fall of 2001. > I suffer short term memory loss and cognitive problems. which really > inproved with the use of Plaquneil, I and others call brain fog. but trust me I > still have it lol but not as often and not as bad. > I hope this info helps you.. > In pa > > > > **************Need a new ride? Check out the largest site for U.S. used car > listings at AOL Autos. > (http://autos.aol.com/used?NCID=aolcmp00300000002851) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Hi tracy, Thanks for responding...The only people who mentioned sarcoidosis was the phlebotomis (spelling) and the x ray tech they both asked me how long i have had sarcoidosis since my neurologist called it inflamation of the spinal cord. I researched and came up with neurosarcoidosis. I guess i will find out for sure soon enough. I will let you know. Kathy > > HI Kathy, > NS is scary, but it is a slow progressing disease. I suspect that once you get the solu-medrol much of that numbness will subside. > Since you don't know yet what is going on- you said they've tested you for MS-- I suspect they did the lumbar puncture? That would tell them if you have a particular band of proteins that are positive for MS. The good news is that MS can be controlled for the most part. > For sarc, they don't know what causes it or what to do with us-- so we are the guinea pigs here. > Since you have some kind of lesion on the spine-- they may want to actually biopsy it-- and that could be a good thing-- they'd send you to a neurosurgeon to do that. > Have they taken any chest xrays, as most (80%) of sarc happens in the lungs, then if it goes throughout the body, it can become very systemic. I truly hope you don't have it. It's the exhaustion and fatigue that I think are the hardest to deal with- we don't like to be slowed down. > Have they even mentioned sarcoidosis? Many of the auto-immune diseases have the same symptoms, so what they do is rule out all the others, and then they come to this. > I'm sure that whatever it is that is putting pressure on your spine is what is causing the numbness- so you probably have some nerve impingement. AGain, once they get the inflamation down, hopefully the problem resolves. > Let us know, and we wish you the best on Thurs. > > Sincerely, > Tracie > NS Co-owner/moderator > > > > New member > > Hi Everyone > > This is rather scary. Reading what some of you are going through. I wish you all the best. > My name is Kathy....I havent been formally diagnosed with this disorder but have been told as I was getting tests " How long have you had sarcoidosis. I knew a woman that had it a couple years ago. I started researching....and since i had to wait 2 mos for an appt with a specialist I had plenty of time to research. My neurologist tells me to wait and see the specialist. When I call for an update on my tests I was told the Dr already gave you the results that he was going to give you. They just expect me to wait until i see the specialist. Well, the wait is almost over. I go thurs. i was told i had a lesion in my spinal cord and was tested for MS. My dr called me and said it's possible i could develope ms in next 5 yrs but he'll just call it an inflamation of the spinal cord he sd just go on with your life and maybe it will go away. I callled him when my right hand started tingling and my toes started going numb and he set me up with > intervenous solu medrol treatments for 3 days. My left hand and arm are numb and getting stiff. some of my fingers arent wrkg very well, my legs are numb and sensations are off in my feet so i lose my balance at times. i could go on but won't. > > So if anyone has any words of encouragement.... or can anyone tell me if this specialist will be doing any tests or am i going just to hear the gourry details. I am getting nervous the closer it gets. > > My prayers will be with the group! Thanks for listening > > Kathy > > > > Get the MapQuest Toolbar, Maps, Traffic, Directions & More! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2008 Report Share Posted April 23, 2008 Hi tracy, Thanks for responding...The only people who mentioned sarcoidosis was the phlebotomis (spelling) and the x ray tech they both asked me how long i have had sarcoidosis since my neurologist called it inflamation of the spinal cord. I researched and came up with neurosarcoidosis. I guess i will find out for sure soon enough. I will let you know. Kathy > > HI Kathy, > NS is scary, but it is a slow progressing disease. I suspect that once you get the solu-medrol much of that numbness will subside. > Since you don't know yet what is going on- you said they've tested you for MS-- I suspect they did the lumbar puncture? That would tell them if you have a particular band of proteins that are positive for MS. The good news is that MS can be controlled for the most part. > For sarc, they don't know what causes it or what to do with us-- so we are the guinea pigs here. > Since you have some kind of lesion on the spine-- they may want to actually biopsy it-- and that could be a good thing-- they'd send you to a neurosurgeon to do that. > Have they taken any chest xrays, as most (80%) of sarc happens in the lungs, then if it goes throughout the body, it can become very systemic. I truly hope you don't have it. It's the exhaustion and fatigue that I think are the hardest to deal with- we don't like to be slowed down. > Have they even mentioned sarcoidosis? Many of the auto-immune diseases have the same symptoms, so what they do is rule out all the others, and then they come to this. > I'm sure that whatever it is that is putting pressure on your spine is what is causing the numbness- so you probably have some nerve impingement. AGain, once they get the inflamation down, hopefully the problem resolves. > Let us know, and we wish you the best on Thurs. > > Sincerely, > Tracie > NS Co-owner/moderator > > > > New member > > Hi Everyone > > This is rather scary. Reading what some of you are going through. I wish you all the best. > My name is Kathy....I havent been formally diagnosed with this disorder but have been told as I was getting tests " How long have you had sarcoidosis. I knew a woman that had it a couple years ago. I started researching....and since i had to wait 2 mos for an appt with a specialist I had plenty of time to research. My neurologist tells me to wait and see the specialist. When I call for an update on my tests I was told the Dr already gave you the results that he was going to give you. They just expect me to wait until i see the specialist. Well, the wait is almost over. I go thurs. i was told i had a lesion in my spinal cord and was tested for MS. My dr called me and said it's possible i could develope ms in next 5 yrs but he'll just call it an inflamation of the spinal cord he sd just go on with your life and maybe it will go away. I callled him when my right hand started tingling and my toes started going numb and he set me up with > intervenous solu medrol treatments for 3 days. My left hand and arm are numb and getting stiff. some of my fingers arent wrkg very well, my legs are numb and sensations are off in my feet so i lose my balance at times. i could go on but won't. > > So if anyone has any words of encouragement.... or can anyone tell me if this specialist will be doing any tests or am i going just to hear the gourry details. I am getting nervous the closer it gets. > > My prayers will be with the group! Thanks for listening > > Kathy > > > > Get the MapQuest Toolbar, Maps, Traffic, Directions & More! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Hello Kathy and welcome... I am Madonna and I realize that you are not far from me in Youngstown, Ohio. We have a sarcoidosis support group that meets the third Thursday of every month in Boardman, Ohio; also Dr. Bernedette Kuchner is from Hermitage and is in our group. Maybe you can attend one of our meetings? I am trying to get the National Sarcoidosis Awareness Day published in the Chase Calendar of events in 2009 so world wide, people will know about the sarc monster. I also have been diagnosed with MS too...right now I am taking a good mix of drugs, prednisone, methotrexate and Avonex with a solumedrol injection every three months and I eat yams and keep a positive attitude. Maybe you can get in contact with me? You probably can pick up the station where I work, WFMJ TV 21, you can contact me there. 330- 744-8611 ext. 231 Thanks for joining us and God bless, Madonna Chism Pinkard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 Hello Kathy and welcome... I am Madonna and I realize that you are not far from me in Youngstown, Ohio. We have a sarcoidosis support group that meets the third Thursday of every month in Boardman, Ohio; also Dr. Bernedette Kuchner is from Hermitage and is in our group. Maybe you can attend one of our meetings? I am trying to get the National Sarcoidosis Awareness Day published in the Chase Calendar of events in 2009 so world wide, people will know about the sarc monster. I also have been diagnosed with MS too...right now I am taking a good mix of drugs, prednisone, methotrexate and Avonex with a solumedrol injection every three months and I eat yams and keep a positive attitude. Maybe you can get in contact with me? You probably can pick up the station where I work, WFMJ TV 21, you can contact me there. 330- 744-8611 ext. 231 Thanks for joining us and God bless, Madonna Chism Pinkard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Hi Madonna, I live in Ohio too--Centerburg. Where is Boardman? I couldn't find it on the map. I must have missed a step in the process when I joined the group. How does everyone know where each other lives and when your birthdays are? If Boardman isn't too far, I would love to come if it's ok. We want to find a support group. I love this group! It has been a huge blessing to me!! Thanks! Cathymadonna4ncd wrote: Hello Kathy and welcome...I am Madonna and I realize that you are not far from me in Youngstown, Ohio. We have a sarcoidosis support group that meets the third Thursday of every month in Boardman, Ohio; also Dr. Bernedette Kuchner is from Hermitage and is in our group. Maybe you can attend one of our meetings? I am trying to get the National Sarcoidosis Awareness Day published in the Chase Calendar of events in 2009 so world wide, people will know about the sarc monster.I also have been diagnosed with MS too...right now I am taking a good mix of drugs, prednisone, methotrexate and Avonex with a solumedrol injection every three months and I eat yams and keep a positive attitude. Maybe you can get in contact with me? You probably can pick up the station where I work, WFMJ TV 21, you can contact me there. ext. 231Thanks for joining us and God bless,Madonna Chism Pinkard 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 May 5, 2008 Report Share Posted May 5, 2008 Hi Madonna, I live in Ohio too--Centerburg. Where is Boardman? I couldn't find it on the map. I must have missed a step in the process when I joined the group. How does everyone know where each other lives and when your birthdays are? If Boardman isn't too far, I would love to come if it's ok. We want to find a support group. I love this group! It has been a huge blessing to me!! Thanks! Cathymadonna4ncd wrote: Hello Kathy and welcome...I am Madonna and I realize that you are not far from me in Youngstown, Ohio. We have a sarcoidosis support group that meets the third Thursday of every month in Boardman, Ohio; also Dr. Bernedette Kuchner is from Hermitage and is in our group. Maybe you can attend one of our meetings? I am trying to get the National Sarcoidosis Awareness Day published in the Chase Calendar of events in 2009 so world wide, people will know about the sarc monster.I also have been diagnosed with MS too...right now I am taking a good mix of drugs, prednisone, methotrexate and Avonex with a solumedrol injection every three months and I eat yams and keep a positive attitude. Maybe you can get in contact with me? You probably can pick up the station where I work, WFMJ TV 21, you can contact me there. ext. 231Thanks for joining us and God bless,Madonna Chism Pinkard 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 6, 2010 Report Share Posted February 6, 2010 Hello all! I am a new Crohnie, just diagnosed in Nov. '09. I have not taken drugs yet, but instead started right away on the SCD. What experiences do others have who have stayed on it for a long time? Are there others who are not currently taking Western drugs? Thanks! Quote Link to comment Share on other sites More sharing options...
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