Re: i'm new

November 10, 2003

Jim - Welcome to the group. I'm just quickly checking my email because I've

got to go to a fundraiser tonight. I'll read the rest of your email later, I

sorta scanned through it. I'm glad they found out what was causing your

problems. We have a couple of guys on the list, they pop in every once in

awhile. We're sometimes a really chatty group and then we have spells like

we've been in the last few days where we barely post much at all. I'm sure

everyone will introduce themselves to you. If you have any questions, ask

away. Only two subjects we've agreeded to stay away from is Religion and

Politics, its safer that way. lol I'm , one of the co-moderators, I have

RA, OA, Gerd, High blood pressure, and numerous other irritating things

going on, but I'm still breathing so I'm doing fine. Our recent spat of cold

weather has me in a flare latley so I'm staying close to my recliner and bed

and heating pad. If you haven't already ran across our web site its:

http://aces_autoimmune.tripod.com/

Welcome again,

November 10, 2003

Welcome to the group Jim....You certainly have had your share, but it's obvious that you're a survivor....We are so glad you came to our group....We are a very supportive group, but also we believe in keeping our spirits up and laughter....Feel free to post anytime, and again welcome.....Pam, Co-Owner with Christy, Owner of List......And four great Moderators, who have caused me to develope instant brain fog....Will the moderators sign in please.....LOL

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I'm new

Greetings allMy name is Jim and I have Central Nervous System vasculitis.It is a pleasure to meet all of you.Below is my story.One of 20By Tom courtreporter@...The weekend after Thanksgiving 1993, J. Bornac's family brought him some leftover turkey to eat from his hospital bed.It wasn't much of a feast, but the La Salle native finally had something to be thankful for; doctors had at last discovered what was wrong with his brain.Over the previous five years, Bornac was crippled by savage headaches. He would get lost driving to work and wind up in a strange town. His mood swings grew so vicious that thinking about what he had to do that day could send him into an emotional tailspin.Bornac and his wife, , sensed the problem was not psychological but physical and begged his doctors to keep testing him for some ailment.Angiograms, MRIs, EEGs and spinal taps revealed nothing. Finally, the Bornacs persuaded a neurologist to order a brain biopsy, a risky and invasive procedure requiring a surgeon to remove a piece of Bornac's brain for analysis."When the neurosurgeon got in there, he said he'd never seen anything like that," Bornac said. "He said just a touch of the veins in my brain would make them bleed."The diagnosis was granulomatous angiitis of the central nervous system, an extremely rare variation of vasculitis of the central nervous system. His disease is marked by headaches, confusion, seizures, brain hemorrhages and the loss of ability to reason.Bornac learned he was one of just 20 known cases in the world, and that the mortality rate was extremely high."If it's not diagnosed, it's fatal," he said. "Up until approximately 1988, it was a fatal disease and they could not diagnose it until after an autopsy. They didn't think I'd make it to 40."In 2002, Bornac celebrated a very happy 40th birthday. He still is unable to work and requires a staggering diet of medication, which has created new health problems.But Bornac is lucky to be alive, and it shows. Despite the threat of an early death, Bornac is cheerful and upbeat. He spends a good part of his day online with other VCNS sufferers, urging them to keep up their spirits.Bornac left La Salle at age 23 to pursue a career in movie theater management. In 1990, he married Goodman, the manager at a rival theater, and the couple later moved to Atlanta before settling in nearby Snellville, Ga.Bornac had a long history of headaches but never pursued medical treatment, figuring he suffered from migraines. But as he inched toward his 30th birthday, the headaches became unbearable."I mean like a `hit your head against a brick wall to make it feel better' headache,'" he said. He also began to experience seizures and disorienting lapses.He visited doctors but was frustrated by the responses. Doctors treated him for depression or allergies, to no avail, or concluded his symptoms were psychosomatic."This is a disease where, when you get it, people think you're crazy or something, because they don't know anything about it," Bornac said. "My wife finally convinced my neurologist that I was not acting right and that there was something wrong."And if it wasn't for her convincing my neurologist of this, I'd have been a goner by now."The 1993 brain biopsy finally enabled doctors to diagnose him correctly, and to prescribe a dizzying regimen of drugs to stave off the symptoms.Doctors first put him on steroids, including a powerful anti-inflammatory that induced osteoporosis, for which he now takes heavy doses of Vitamin D and calcium.He also takes anti-seizure drugs, aspirin to break up blood clots in his legs (another byproduct of heavy medication), drugs to fend off vertigo, plus palliatives to keep ulcers from forming in his battered stomach.An attempt to wean him off the anti-inflammatory nearly killed him. He suffered at least three brain hemorrhages during that period and had a weeks-long blackout during which his family told him he'd become deranged.Even today, thinking too much can send him into a tizzy."Sometimes I'll stand here in the kitchen and literally walk around in circles thinking about what I have to do next," he said. "Because even the simple things in life are overwhelming."All of which has terrified his parents, Augie and Joan Bornac of La Salle."It's been rough," admitted Augie Bornac, who said he prays for his son many times a day. "They told him several times to make (funeral) arrangements."Bornac speaks to at least one of his parents every day and they visit him several times a year. Jim Bornac cannot travel; he has to stay close to his doctors at all times.Support from his family is important because one of Bornac's challenges is getting people to understand what he has."You just basically tell people there's something wrong with your brain. It's a rare disorder — headaches, you can't think straight. But nobody gets it at all."Write to Jim Bornac at GemBo81262@.... Please visit our website at:http://ACES_Autoimmune.tripod.com

November 10, 2003

Welcome, Jim!

P.

-- I'm new

Greetings allMy name is Jim and I have Central Nervous System vasculitis.It is a pleasure to meet all of you.Below is my story.One of 20By Tom courtreporter@...The weekend after Thanksgiving 1993, J. Bornac's family brought him some leftover turkey to eat from his hospital bed.It wasn't much of a feast, but the La Salle native finally had something to be thankful for; doctors had at last discovered what was wrong with his brain.Over the previous five years, Bornac was crippled by savage headaches. He would get lost driving to work and wind up in a strange town. His mood swings grew so vicious that thinking about what he had to do that day could send him into an emotional tailspin.Bornac and his wife, , sensed the problem was not psychological but physical and begged his doctors to keep testing him for some ailment.Angiograms, MRIs, EEGs and spinal taps revealed nothing. Finally, the Bornacs persuaded a neurologist to order a brain biopsy, a risky and invasive procedure requiring a surgeon to remove a piece of Bornac's brain for analysis."When the neurosurgeon got in there, he said he'd never seen anything like that," Bornac said. "He said just a touch of the veins in my brain would make them bleed."The diagnosis was granulomatous angiitis of the central nervous system, an extremely rare variation of vasculitis of the central nervous system. His disease is marked by headaches, confusion, seizures, brain hemorrhages and the loss of ability to reason.Bornac learned he was one of just 20 known cases in the world, and that the mortality rate was extremely high."If it's not diagnosed, it's fatal," he said. "Up until approximately 1988, it was a fatal disease and they could not diagnose it until after an autopsy. They didn't think I'd make it to 40."In 2002, Bornac celebrated a very happy 40th birthday. He still is unable to work and requires a staggering diet of medication, which has created new health problems.But Bornac is lucky to be alive, and it shows. Despite the threat of an early death, Bornac is cheerful and upbeat. He spends a good part of his day online with other VCNS sufferers, urging them to keep up their spirits.Bornac left La Salle at age 23 to pursue a career in movie theater management. In 1990, he married Goodman, the manager at a rival theater, and the couple later moved to Atlanta before settling in nearby Snellville, Ga.Bornac had a long history of headaches but never pursued medical treatment, figuring he suffered from migraines. But as he inched toward his 30th birthday, the headaches became unbearable."I mean like a `hit your head against a brick wall to make it feel better' headache,'" he said. He also began to experience seizures and disorienting lapses.He visited doctors but was frustrated by the responses. Doctors treated him for depression or allergies, to no avail, or concluded his symptoms were psychosomatic."This is a disease where, when you get it, people think you're crazy or something, because they don't know anything about it," Bornac said. "My wife finally convinced my neurologist that I was not acting right and that there was something wrong."And if it wasn't for her convincing my neurologist of this, I'd have been a goner by now."The 1993 brain biopsy finally enabled doctors to diagnose him correctly, and to prescribe a dizzying regimen of drugs to stave off the symptoms.Doctors first put him on steroids, including a powerful anti-inflammatory that induced osteoporosis, for which he now takes heavy doses of Vitamin D and calcium.He also takes anti-seizure drugs, aspirin to break up blood clots in his legs (another byproduct of heavy medication), drugs to fend off vertigo, plus palliatives to keep ulcers from forming in his battered stomach.An attempt to wean him off the anti-inflammatory nearly killed him. He suffered at least three brain hemorrhages during that period and had a weeks-long blackout during which his family told him he'd become deranged.Even today, thinking too much can send him into a tizzy."Sometimes I'll stand here in the kitchen and literally walk around in circles thinking about what I have to do next," he said. "Because even the simple things in life are overwhelming."All of which has terrified his parents, Augie and Joan Bornac of La Salle."It's been rough," admitted Augie Bornac, who said he prays for his son many times a day. "They told him several times to make (funeral) arrangements."Bornac speaks to at least one of his parents every day and they visit him several times a year. Jim Bornac cannot travel; he has to stay close to his doctors at all times.Support from his family is important because one of Bornac's challenges is getting people to understand what he has."You just basically tell people there's something wrong with your brain. It's a rare disorder — headaches, you can't think straight. But nobody gets it at all."Write to Jim Bornac at GemBo81262@.... Please visit our website at:http://ACES_Autoimmune.tripod.com

November 11, 2003

Jim,

I read your story this morning. I'm in Carrollton, GA, so we're almost neighbors! I had never heard of Nervous System vasculitis, so I may ask questions as we get to know you. I'm . I have Crohn's Disease & the stuff that goes along with it & the steroids used to treat it - like adrenal insufficiency, osteopenia, arthritis, depression. I'm on Remicade, prednisone, Pentasa, 6-MP, & a bunch of meds for the side effects of the meds & to prevent under nutrition (1/2 my small bowel was removed 11 yrs. ago).

Welcome to the group. Jump in & ask us/ tell us anything.

P.

-- I'm new

Greetings allMy name is Jim and I have Central Nervous System vasculitis.It is a pleasure to meet all of you.Below is my story.One of 20By Tom courtreporter@...The weekend after Thanksgiving 1993, J. Bornac's family brought him some leftover turkey to eat from his hospital bed.It wasn't much of a feast, but the La Salle native finally had something to be thankful for; doctors had at last discovered what was wrong with his brain.Over the previous five years, Bornac was crippled by savage headaches. He would get lost driving to work and wind up in a strange town. His mood swings grew so vicious that thinking about what he had to do that day could send him into an emotional tailspin.Bornac and his wife, , sensed the problem was not psychological but physical and begged his doctors to keep testing him for some ailment.Angiograms, MRIs, EEGs and spinal taps revealed nothing. Finally, the Bornacs persuaded a neurologist to order a brain biopsy, a risky and invasive procedure requiring a surgeon to remove a piece of Bornac's brain for analysis."When the neurosurgeon got in there, he said he'd never seen anything like that," Bornac said. "He said just a touch of the veins in my brain would make them bleed."The diagnosis was granulomatous angiitis of the central nervous system, an extremely rare variation of vasculitis of the central nervous system. His disease is marked by headaches, confusion, seizures, brain hemorrhages and the loss of ability to reason.Bornac learned he was one of just 20 known cases in the world, and that the mortality rate was extremely high."If it's not diagnosed, it's fatal," he said. "Up until approximately 1988, it was a fatal disease and they could not diagnose it until after an autopsy. They didn't think I'd make it to 40."In 2002, Bornac celebrated a very happy 40th birthday. He still is unable to work and requires a staggering diet of medication, which has created new health problems.But Bornac is lucky to be alive, and it shows. Despite the threat of an early death, Bornac is cheerful and upbeat. He spends a good part of his day online with other VCNS sufferers, urging them to keep up their spirits.Bornac left La Salle at age 23 to pursue a career in movie theater management. In 1990, he married Goodman, the manager at a rival theater, and the couple later moved to Atlanta before settling in nearby Snellville, Ga.Bornac had a long history of headaches but never pursued medical treatment, figuring he suffered from migraines. But as he inched toward his 30th birthday, the headaches became unbearable."I mean like a `hit your head against a brick wall to make it feel better' headache,'" he said. He also began to experience seizures and disorienting lapses.He visited doctors but was frustrated by the responses. Doctors treated him for depression or allergies, to no avail, or concluded his symptoms were psychosomatic."This is a disease where, when you get it, people think you're crazy or something, because they don't know anything about it," Bornac said. "My wife finally convinced my neurologist that I was not acting right and that there was something wrong."And if it wasn't for her convincing my neurologist of this, I'd have been a goner by now."The 1993 brain biopsy finally enabled doctors to diagnose him correctly, and to prescribe a dizzying regimen of drugs to stave off the symptoms.Doctors first put him on steroids, including a powerful anti-inflammatory that induced osteoporosis, for which he now takes heavy doses of Vitamin D and calcium.He also takes anti-seizure drugs, aspirin to break up blood clots in his legs (another byproduct of heavy medication), drugs to fend off vertigo, plus palliatives to keep ulcers from forming in his battered stomach.An attempt to wean him off the anti-inflammatory nearly killed him. He suffered at least three brain hemorrhages during that period and had a weeks-long blackout during which his family told him he'd become deranged.Even today, thinking too much can send him into a tizzy."Sometimes I'll stand here in the kitchen and literally walk around in circles thinking about what I have to do next," he said. "Because even the simple things in life are overwhelming."All of which has terrified his parents, Augie and Joan Bornac of La Salle."It's been rough," admitted Augie Bornac, who said he prays for his son many times a day. "They told him several times to make (funeral) arrangements."Bornac speaks to at least one of his parents every day and they visit him several times a year. Jim Bornac cannot travel; he has to stay close to his doctors at all times.Support from his family is important because one of Bornac's challenges is getting people to understand what he has."You just basically tell people there's something wrong with your brain. It's a rare disorder — headaches, you can't think straight. But nobody gets it at all."Write to Jim Bornac at GemBo81262@.... Please visit our website at:http://ACES_Autoimmune.tripod.com

November 12, 2003

It's a pleasure to meet you Jim. Wow, What a story! Welcome to the group.

Shirley

co-moderator (who hasn't been around much lately)Jim wrote:

Greetings allMy name is Jim and I have Central Nervous System vasculitis.It is a pleasure to meet all of you.Below is my story.One of 20By Tom courtreporter@...The weekend after Thanksgiving 1993, J. Bornac's family brought him some leftover turkey to eat from his hospital bed.It wasn't much of a feast, but the La Salle native finally had something to be thankful for; doctors had at last discovered what was wrong with his brain.Over the previous five years, Bornac was crippled by savage headaches. He would get lost driving to work and wind up in a strange town. His mood swings grew so vicious that thinking about what he had to do that day could send him into an emotional tailspin.Bornac and his wife, , sensed the problem was not psychological but

physical and begged his doctors to keep testing him for some ailment.Angiograms, MRIs, EEGs and spinal taps revealed nothing. Finally, the Bornacs persuaded a neurologist to order a brain biopsy, a risky and invasive procedure requiring a surgeon to remove a piece of Bornac's brain for analysis."When the neurosurgeon got in there, he said he'd never seen anything like that," Bornac said. "He said just a touch of the veins in my brain would make them bleed."The diagnosis was granulomatous angiitis of the central nervous system, an extremely rare variation of vasculitis of the central nervous system. His disease is marked by headaches, confusion, seizures, brain hemorrhages and the loss of ability to reason.Bornac learned he was one of just 20 known cases in the world, and that the mortality rate was extremely high."If it's not diagnosed, it's fatal," he said. "Up until approximately 1988, it was a

fatal disease and they could not diagnose it until after an autopsy. They didn't think I'd make it to 40."In 2002, Bornac celebrated a very happy 40th birthday. He still is unable to work and requires a staggering diet of medication, which has created new health problems.But Bornac is lucky to be alive, and it shows. Despite the threat of an early death, Bornac is cheerful and upbeat. He spends a good part of his day online with other VCNS sufferers, urging them to keep up their spirits.Bornac left La Salle at age 23 to pursue a career in movie theater management. In 1990, he married Goodman, the manager at a rival theater, and the couple later moved to Atlanta before settling in nearby Snellville, Ga.Bornac had a long history of headaches but never pursued medical treatment, figuring he suffered from migraines. But as he inched toward his 30th birthday, the headaches became unbearable."I

mean like a `hit your head against a brick wall to make it feel better' headache,'" he said. He also began to experience seizures and disorienting lapses.He visited doctors but was frustrated by the responses. Doctors treated him for depression or allergies, to no avail, or concluded his symptoms were psychosomatic."This is a disease where, when you get it, people think you're crazy or something, because they don't know anything about it," Bornac said. "My wife finally convinced my neurologist that I was not acting right and that there was something wrong."And if it wasn't for her convincing my neurologist of this, I'd have been a goner by now."The 1993 brain biopsy finally enabled doctors to diagnose him correctly, and to prescribe a dizzying regimen of drugs to stave off the symptoms.Doctors first put him on steroids, including a powerful anti-inflammatory that induced osteoporosis, for which he

now takes heavy doses of Vitamin D and calcium.He also takes anti-seizure drugs, aspirin to break up blood clots in his legs (another byproduct of heavy medication), drugs to fend off vertigo, plus palliatives to keep ulcers from forming in his battered stomach.An attempt to wean him off the anti-inflammatory nearly killed him. He suffered at least three brain hemorrhages during that period and had a weeks-long blackout during which his family told him he'd become deranged.Even today, thinking too much can send him into a tizzy."Sometimes I'll stand here in the kitchen and literally walk around in circles thinking about what I have to do next," he said. "Because even the simple things in life are overwhelming."All of which has terrified his parents, Augie and Joan Bornac of La Salle."It's been rough," admitted Augie Bornac, who said he prays for his son many times a day. "They told him

several times to make (funeral) arrangements."Bornac speaks to at least one of his parents every day and they visit him several times a year. Jim Bornac cannot travel; he has to stay close to his doctors at all times.Support from his family is important because one of Bornac's challenges is getting people to understand what he has."You just basically tell people there's something wrong with your brain. It's a rare disorder — headaches, you can't think straight. But nobody gets it at all."Write to Jim Bornac at GemBo81262@.... Please visit our website at:http://ACES_Autoimmune.tripod.com

November 9, 2009

Welcome, Jennie!Abby

Hi everyone,

I am new to the group. I just picked up Intuitive Eating this weekend along with Life without Ed and Goodbye Ed (about recovering from an eating disorder). I was bulimic for 22 years but I stopped purging last March. I thought I didn't have a problem anymore because I was no longer purging but I didn't realize how much I was restricting and then bingeing. I went to a weight loss center last June and managed to lose weight but was struggling with the last 10 lbs. I would be " really good " before my weigh-in then binge that night and the next few nights. Then restrict in order to weigh in again. I am sick of fighting my body and living in a food daze. I am ready to commit to intuitive eating so I am so glad that I found this website!

Jennie

November 9, 2009

Welcome Jennie. I am sure you will find support that is encouraging and gentle

too. Looking forward to reading more posts from you -

Best wishes, Katcha

IEing since March 2007

>

> Hi everyone,

> I am new to the group. I just picked up Intuitive Eating this weekend along

with Life without Ed and Goodbye Ed (about recovering from an eating disorder).

I was bulimic for 22 years but I stopped purging last March. I thought I didn't

have a problem anymore because I was no longer purging but I didn't realize how

much I was restricting and then bingeing. I went to a weight loss center last

June and managed to lose weight but was struggling with the last 10 lbs. I

would be " really good " before my weigh-in then binge that night and the next few

nights. Then restrict in order to weigh in again. I am sick of fighting my

body and living in a food daze. I am ready to commit to intuitive eating so I

am so glad that I found this website!

>

> Jennie

>

December 14, 2009

Well, if anyone coming here has ever looked like they've found a home, it's you.

;-) Seems like you are really ready for IE. Good for you. I am still new to

it. IE is great in that you can bite off as much as you want to chew at a time.

:-)

keep coming around. Look forward to " hearing " from you.

KT

>

> hello everyone. just wanted to introduce myself. my name is karie and i have

been struggling with my eating since 2000. when i first lost weight back in 98,

i did it by eating more healthy and exercising. i then found a program that

states one has to eat every 3 hours, 6 times a day and one could have a cheat

day. well this totally warped my brain and i soon found myself severely

restricting my cals during the week, obsessing over what time i have to eat or

how much i could eat (not based on how i felt) and then i would feel so

restricted by weeks end that my cheat day was a binge fest where i would consume

5000 cals worth of food for the day. i then would start fresh again on monday

and workout for 2 hrs to compensate and restrict my eating. It is a vicious

cycle. so here i am. I binged yesterday and i just said enough is enough. I feel

like i have completely lost the connection with my natural hunger signals. i'm

ready to trust my body and let it dictate my natrual hunger levels. i can't take

it anymore. I can't be ruled by food. i'm exhausted and just want to be free. i

look forward to getting to know all of you on this journey.

>

December 14, 2009

Welcome Karie. You can find lots of good support here and many members who can

relate to your previous experiences as well as sharing in the (re?)learning

process we all are going thru with IE. Looking forward to reading more posts

from you and do jump right in with questions of comments.

BEST to you, Katcha