Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 But yesterday we went out to dinner and he was sitting in his high chair and bumped his head. He even had a small bump. So today it went right back on. ) , My daycare lady thinks the band is great for bump patrol. Reaghan is still unstable sometimes while sitting and the band comes in handy when she takes a spill. We went to Reaghan's 6 month check up today and my ped said that she could see some improvement in Reaghan's forehead already. That did make me feel better since we had to be recasted Tuesday, because ours didn't fit quite right (after only 14 days in it). It took 4 weeks to get our first band. The Orthotis people waited for insurance approval before they sent the casting to Orthomerica. UGH. It was ok if she was sitting down and staying pretty still, but otherwise it would pop up on her forehead. We all know how well 6 month old's stay still. I was constantly adjusting. I thought I would wear out the velcro. Anyway, hope your issues get resolved tomorrow. Sounds like the adjustment process is key to success and of course, your orthotist. Connie & Reaghan (8/3/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Re itching -- ask about Atarex. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 4/27/2001 2:22:30 PM Eastern Daylight Time, tartboys@... writes: > > I agree totally. I watched the news last night and thought the same thing. > Before I had my MGB I knew about the possible complications including bile > reflux. Didn't we all do the same amount of " homework " before we had the > MGB? > > Maybe I should post the complication that has affected me (one I didn't know > , After this post I am taking a break from this list. A year ago when we had the surgery the manual said you do NOT get bile from the surgery. Dr.R. has updated the site and manual as needed. He has added supplements because we need them. He used to say you could drink after six months but then learn it was not good. YES, we did our homework, yes we are following the regiment, The reason we are here is to inform each other of problems and help with solutions. Have a great weekend! Trish Lanman MGB 6/01/2000 start weight 245 day of surgery 214 04/08/01 180 Self pay Off all medication except prevacid, supplements, & .200 mg of synthroid.(under active thyroid) All the above said in my post is JUST MY OPINION! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 just wanted to put my 2 pennies in lol doctor r said to me --we learn things everyday and if there was anything i needed to ask e-mail or call and if something was not right or causing complications then that is how he learns and studies and put new updates on the web and in the booklet ie like the bile thingy and just think if we didn't have the major homework that doctor r made us do gosh the ladies at work whom had surgeries in the past 8 years had no homework or 3/4 of the info i had before having my surgery they played it by trail and error or learned from others the hard way so I guess we were blessed with more knowledge before making our decisions for that I am really grateful di Re: > In a message dated 4/27/2001 2:22:30 PM Eastern Daylight Time, > tartboys@... writes: > > > > > > I agree totally. I watched the news last night and thought the same thing. > > Before I had my MGB I knew about the possible complications including bile > > reflux. Didn't we all do the same amount of " homework " before we had the > > MGB? > > > > Maybe I should post the complication that has affected me (one I didn't know > > > > , > After this post I am taking a break from this list. A year ago when we had > the surgery the manual said you do NOT get bile from the surgery. > Dr.R. has updated the site and manual as needed. He has added supplements > because we need them. He used to say you could drink after six months but > then learn it was not good. YES, we did our homework, yes we are following > the regiment, The reason we are here is to inform each other of problems and > help with solutions. > Have a great weekend! > > > Trish Lanman > MGB 6/01/2000 > start weight 245 > day of surgery 214 > 04/08/01 180 > Self pay > Off all medication except prevacid, supplements, & .200 mg of > synthroid.(under active thyroid) > All the above said in my post is JUST MY OPINION! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2001 Report Share Posted October 22, 2001 Carla, You're going to make me cry..... I wish everyone could see me through your eyes <grin>. Yes, go to the make-up counter. They don't care that you have zits. But I hear ya, girl... I've got 'em too. And I just turned 30 on Sept 28. UGH! I feel SO old! If you're as old as you feel I must be about 100 <grin>. Just kidding. Hugs, in OK In a message dated 10/22/2001 7:19:07 PM Pacific Daylight Time, nachofestr2@... writes: << Hi I said the nice things because they are true. You are really a special person, and I know you really made alot of impact on me because I saw you as a preop, and then at the picnic, and you really are beautiful inside and out. I am really proud of you and how far you have come, because I know it hasnt been easy and you have went through alot of things to get where you are now, and I admire your courage and stregnth! You deserve the best and I hope you get it ! Your friend in NC Carla Medlin PS. I think you guys are right about me picking the wrong foundation. I just cant tell what in the world is the right foundation color. Sounds like I have to face those folks at the cosmetic counter and get that part done right. And what is triping me out, is I have zits now. I never had these as a teenager. Darn I am umm 30 ( says this really quiet, so no one else hears confession. ) Whats up with this?? :] >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Hi ... is in my thoughts & prayers, as are you. Hugs of Hope... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 HI SHELLEY: I CAN UNDERSTAND YOUR FRUSTRATION WITH THE ON AGAIN OFF AGAIN TEST RESULTS. I WAS DIAGNOSED POSITIVE IN 1994 AND THEN AGAIN WAS TESTED IN 2000 BECAUSE I BECAME ILL AGAIN AND THE TESTS CAME BACK NEGATIVE. THE DOCTORS SAID I HAD NEVER HAD IT, BUT I FELT THAT I DID. SO I MOVED TO A DIFFERENT CITY AND TOLD THE DR'S THAT I HAD TESTED POSITIVE AND THEY RAN THE TESTS AND IT WAS STILL NEGATIVE. I THEN GOT AN IN HOME TEST FROM THE HEP C FOUNDATION AND IT CAME BACK POSITIVE AND THEY TOLD ME TO HAVE THE DR'S RUN A VIRAL LODE TEST INSTEAD AND SURE ENOUGH IT CAME BACK WITH A VIRAL LODE OF OVER 1,000,000. THEN THE DOCTOR HAD THE NERVE TO ASK ME IF I WAS USING IV DRUGS. I WAS FURIOUS AND STATED THAT I HAD TESTED POSITIVE IN 1994 SO THEY ASKED FOR MY MEDICAL RECORDS. NEEDLESS TO SAY THEY NEVER APOLOGISED. SINCE THEN I HAVE HAD THE TEST RAN SEVERAL TIMES AND I AM STILL POSITIVE. I HAD A LIVER BIOPSY DONE IN SEPT. 2001 AND I AM IN STAGE 2/3 FIBROSIS. I AM HOPING TO START TREATMENTS SOON. MY X HUSBAND STILL TESTS NEGATIVE. I AQUIRED HEP C FROM A TRANSFUSION IN 1974 AFTER AN ECTOPIC PREGNANCY RUPTURED. NO ONE IN MY FAMILY HAS IT. MY PRAYERS ARE WITH YOU AND YOUR FAMILY. HEP C CAN BE A SNEAKY DISEASE, BUT IT CAN ALSO BE A BATTLE THAT CAN BE WON. HANG IN THERE LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 HI SHELLEY: I CAN UNDERSTAND YOUR FRUSTRATION WITH THE ON AGAIN OFF AGAIN TEST RESULTS. I WAS DIAGNOSED POSITIVE IN 1994 AND THEN AGAIN WAS TESTED IN 2000 BECAUSE I BECAME ILL AGAIN AND THE TESTS CAME BACK NEGATIVE. THE DOCTORS SAID I HAD NEVER HAD IT, BUT I FELT THAT I DID. SO I MOVED TO A DIFFERENT CITY AND TOLD THE DR'S THAT I HAD TESTED POSITIVE AND THEY RAN THE TESTS AND IT WAS STILL NEGATIVE. I THEN GOT AN IN HOME TEST FROM THE HEP C FOUNDATION AND IT CAME BACK POSITIVE AND THEY TOLD ME TO HAVE THE DR'S RUN A VIRAL LODE TEST INSTEAD AND SURE ENOUGH IT CAME BACK WITH A VIRAL LODE OF OVER 1,000,000. THEN THE DOCTOR HAD THE NERVE TO ASK ME IF I WAS USING IV DRUGS. I WAS FURIOUS AND STATED THAT I HAD TESTED POSITIVE IN 1994 SO THEY ASKED FOR MY MEDICAL RECORDS. NEEDLESS TO SAY THEY NEVER APOLOGISED. SINCE THEN I HAVE HAD THE TEST RAN SEVERAL TIMES AND I AM STILL POSITIVE. I HAD A LIVER BIOPSY DONE IN SEPT. 2001 AND I AM IN STAGE 2/3 FIBROSIS. I AM HOPING TO START TREATMENTS SOON. MY X HUSBAND STILL TESTS NEGATIVE. I AQUIRED HEP C FROM A TRANSFUSION IN 1974 AFTER AN ECTOPIC PREGNANCY RUPTURED. NO ONE IN MY FAMILY HAS IT. MY PRAYERS ARE WITH YOU AND YOUR FAMILY. HEP C CAN BE A SNEAKY DISEASE, BUT IT CAN ALSO BE A BATTLE THAT CAN BE WON. HANG IN THERE LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Thank you for responding. The tests that are put out these days are suppose to be more accurate , they say. Our specialist said that my husband could start treatment immediately if need be. We haven't the results from his biospy back yet. It seems there has been a waiting list or some mix arounds with other people around the country as far as getting treated. That is an awful shame. I feel fortunate enough that we have it readily available at our fingertips and that the doctors and specialists that we got in contact with are on top of things. However, we are still mystified about the the on and off diagnosis. Does the disease mask itself against todays test? Or can it? Our specialist runs two sorts of tests. (names have escaped me) The first test gets sent to another lab which takes about 7 days. Then the other test gets sent to milwaukee which takes about 2 weeks. Sandy Booton <ibsandy77@...> wrote: HI SHELLEY: I CAN UNDERSTAND YOUR FRUSTRATION WITH THE ON AGAIN OFF AGAIN TEST RESULTS. I WAS DIAGNOSED POSITIVE IN 1994 AND THEN AGAIN WAS TESTED IN 2000 BECAUSE I BECAME ILL AGAIN AND THE TESTS CAME BACK NEGATIVE. THE DOCTORS SAID I HAD NEVER HAD IT, BUT I FELT THAT I DID. SO I MOVED TO A DIFFERENT CITY AND TOLD THE DR'S THAT I HAD TESTED POSITIVE AND THEY RAN THE TESTS AND IT WAS STILL NEGATIVE. I THEN GOT AN IN HOME TEST FROM THE HEP C FOUNDATION AND IT CAME BACK POSITIVE AND THEY TOLD ME TO HAVE THE DR'S RUN A VIRAL LODE TEST INSTEAD AND SURE ENOUGH IT CAME BACK WITH A VIRAL LODE OF OVER 1,000,000. THEN THE DOCTOR HAD THE NERVE TO ASK ME IF I WAS USING IV DRUGS. I WAS FURIOUS AND STATED THAT I HAD TESTED POSITIVE IN 1994 SO THEY ASKED FOR MY MEDICAL RECORDS. NEEDLESS TO SAY THEY NEVER APOLOGISED. SINCE THEN I HAVE HAD THE TEST RAN SEVERAL TIMES AND I AM STILL POSITIVE. I HAD A LIVER BIOPSY DONE IN SEPT. 2001 AND I AM IN STAGE 2/3 FIBROSIS. I AM HOPING TO START TREATMENTS SOON. MY X HUSBAND STILL TESTS NEGATIVE. I AQUIRED HEP C FROM A TRANSFUSION IN 1974 AFTER AN ECTOPIC PREGNANCY RUPTURED. NO ONE IN MY FAMILY HAS IT. MY PRAYERS ARE WITH YOU AND YOUR FAMILY. HEP C CAN BE A SNEAKY DISEASE, BUT IT CAN ALSO BE A BATTLE THAT CAN BE WON. HANG IN THERE LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 Thank you for responding. The tests that are put out these days are suppose to be more accurate , they say. Our specialist said that my husband could start treatment immediately if need be. We haven't the results from his biospy back yet. It seems there has been a waiting list or some mix arounds with other people around the country as far as getting treated. That is an awful shame. I feel fortunate enough that we have it readily available at our fingertips and that the doctors and specialists that we got in contact with are on top of things. However, we are still mystified about the the on and off diagnosis. Does the disease mask itself against todays test? Or can it? Our specialist runs two sorts of tests. (names have escaped me) The first test gets sent to another lab which takes about 7 days. Then the other test gets sent to milwaukee which takes about 2 weeks. Sandy Booton <ibsandy77@...> wrote: HI SHELLEY: I CAN UNDERSTAND YOUR FRUSTRATION WITH THE ON AGAIN OFF AGAIN TEST RESULTS. I WAS DIAGNOSED POSITIVE IN 1994 AND THEN AGAIN WAS TESTED IN 2000 BECAUSE I BECAME ILL AGAIN AND THE TESTS CAME BACK NEGATIVE. THE DOCTORS SAID I HAD NEVER HAD IT, BUT I FELT THAT I DID. SO I MOVED TO A DIFFERENT CITY AND TOLD THE DR'S THAT I HAD TESTED POSITIVE AND THEY RAN THE TESTS AND IT WAS STILL NEGATIVE. I THEN GOT AN IN HOME TEST FROM THE HEP C FOUNDATION AND IT CAME BACK POSITIVE AND THEY TOLD ME TO HAVE THE DR'S RUN A VIRAL LODE TEST INSTEAD AND SURE ENOUGH IT CAME BACK WITH A VIRAL LODE OF OVER 1,000,000. THEN THE DOCTOR HAD THE NERVE TO ASK ME IF I WAS USING IV DRUGS. I WAS FURIOUS AND STATED THAT I HAD TESTED POSITIVE IN 1994 SO THEY ASKED FOR MY MEDICAL RECORDS. NEEDLESS TO SAY THEY NEVER APOLOGISED. SINCE THEN I HAVE HAD THE TEST RAN SEVERAL TIMES AND I AM STILL POSITIVE. I HAD A LIVER BIOPSY DONE IN SEPT. 2001 AND I AM IN STAGE 2/3 FIBROSIS. I AM HOPING TO START TREATMENTS SOON. MY X HUSBAND STILL TESTS NEGATIVE. I AQUIRED HEP C FROM A TRANSFUSION IN 1974 AFTER AN ECTOPIC PREGNANCY RUPTURED. NO ONE IN MY FAMILY HAS IT. MY PRAYERS ARE WITH YOU AND YOUR FAMILY. HEP C CAN BE A SNEAKY DISEASE, BUT IT CAN ALSO BE A BATTLE THAT CAN BE WON. HANG IN THERE LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 SHELLEY: THE ONLY ANSWER I HAVE TO THE QUESTION ABOUT THE DISEASE MASKING ITSELF IS THAT THE INFECTED CELLS KEEP MUTATING WHICH IS ALSO WHY THEY SAY THERE ISNT A CURE YET. I THINK ITS HOGWASH, BUT I AM NO SPECIALIST. EVEN NAOMI JUDD HAD NEGATIVE RESULTS AT FIRST AND THEN HER DOCTOR REVERSED HIS DIAGNOSIS AND SHE HAD A POSITIVE TEST. WHEN THE FIRST DOCTOR I SAW FOUND IT SHE WASNT LOOKING FOR IT, SHE THOUGHT I HAD B TYPE AND HER WORDS WERE...AND THIS IS A QUOTE...THE GOOD NEWS IS YOU DONT HAVE HEP B..THE BAD NEWS IS YOUR POSITIVE FOR HEP C. I DIDNT EVEN KNOW WHAT IT WAS. ANOTHER THING IS THAT YOUR LUCKY YOUR DOCTORS ARE SO EMPATHATEC...THE SPECIALISTS AROUND HERE HAVE THE ATTITUDE THAT IF YOU HAVE IT YOU DESERVED TO GET IT. STILL MY PRAYERS ARE WITH YOU AND ALL OTHERS THAT HAVE BEEN HIT WITH THIS DISEASE. I WILL KNOW MORE ON THE 11TH. TALK WITH YOU SOON AND GOD BLESS. LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2002 Report Share Posted June 9, 2002 SHELLEY: THE ONLY ANSWER I HAVE TO THE QUESTION ABOUT THE DISEASE MASKING ITSELF IS THAT THE INFECTED CELLS KEEP MUTATING WHICH IS ALSO WHY THEY SAY THERE ISNT A CURE YET. I THINK ITS HOGWASH, BUT I AM NO SPECIALIST. EVEN NAOMI JUDD HAD NEGATIVE RESULTS AT FIRST AND THEN HER DOCTOR REVERSED HIS DIAGNOSIS AND SHE HAD A POSITIVE TEST. WHEN THE FIRST DOCTOR I SAW FOUND IT SHE WASNT LOOKING FOR IT, SHE THOUGHT I HAD B TYPE AND HER WORDS WERE...AND THIS IS A QUOTE...THE GOOD NEWS IS YOU DONT HAVE HEP B..THE BAD NEWS IS YOUR POSITIVE FOR HEP C. I DIDNT EVEN KNOW WHAT IT WAS. ANOTHER THING IS THAT YOUR LUCKY YOUR DOCTORS ARE SO EMPATHATEC...THE SPECIALISTS AROUND HERE HAVE THE ATTITUDE THAT IF YOU HAVE IT YOU DESERVED TO GET IT. STILL MY PRAYERS ARE WITH YOU AND ALL OTHERS THAT HAVE BEEN HIT WITH THIS DISEASE. I WILL KNOW MORE ON THE 11TH. TALK WITH YOU SOON AND GOD BLESS. LOVE IN HIS LIGHT SANDY --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Dear Rhonda, It is nice to hear that I am not neurotic about the right upper quad pain. I feel like they keep telling me that I shouldn't hurt at all, but I do. I take the prednisone to help with the AIH and Lupus. But I feel like it isn't working very well. I know they are trying to get the right combo of meds and the right doses but it seems to take forever. Plus they never schedule their tests on the same day which makes for a long diagnostic course and a lot of NPO. They have been giving me Nexium too. I take what seems like twenty pills a day. How long has it taken for you to feel any better??? I am very curious at the usual course of the disease I have looked up some on the AIH but it doesn't really give a very clear picture. Have you found a good web site that gives a clearer picture. Friends, >From: " savedbybunnies " <rbsteff@...> >Reply- > >Subject: [ ] >Date: Mon, 02 Sep 2002 23:08:33 -0000 > >Dear : >I haven't yet applied for disability yet, but have been researching >it here and there. I joined a group for disability in and it >has helped me in getting past my intimidation factor for applying. I >will have to approach this next step within the next couple of >weeks. I've discovered a major component for acceptance is >depression and fatigue. Of course most of us have that and a lot of >us are being treated for it. > >As far as the quadrant pain goes...most of our dr.s tell us the same >thing you heard. But we have it nontheless. My dr. put me on Nexium >for it. He said esophagus inflammation can cause quadrant pain. I >doubted it, but tried it anyway and it worked! This group is great >for maintaining your sanity. You'll find that a good portion of us >experience symtoms that the dr.s refuse to acknowledge. It's a shame >more dr.s don't take advantage of these sites to gain insight! > >Anway, please feel free to email me personally if you need to talk. >Hugs, >Rhonda/TN > > > > > Dear Rhonda and Debby, > > > > I have currently been diagnosed with AIH and Lupus along with >fibromyalgia. > > I wake every night with night sweats, run a constant temperature, >have hot > > flashes and itch all over. I also ache everywhere. I have not >been able to > > work for the last month and am very scared about my finances and >my > > diagnosis. > > > > I am also contemplating applying for disability can you give me >some tips or > > let me know how I need to proceed. Like you said it is alot less >than my RN > > salary, but is better than nothing. I had never heard of >autoimmune > > hepatitis until my doctor thought I had it. Since then I have had >at least > > one major test a week. I have upper right quadrant pain and they >say AIH > > doesn't cause pain. I had an EGD, ERCP, liver biopsy, and >colonoscopy. I > > am so tired of tests and so tired of feeling so awful!! > > > > Thanks for any information that you can give me or support. > > > > > > > > > > >From: " savedbybunnies " <rbsteff@h...> > > >Reply- @y... > > > @y... > > >Subject: [ ] Re: Some feedback please > > >Date: Mon, 02 Sep 2002 05:33:51 -0000 > > > > > >Dear Debby: > > >I don't know if you are currently on disability or not, but I do > > >know that another diagnosis will help your case in that regard. >Just > > >a thought. > > >Hugs, > > >Rhonda/TN > > > > > > > > > > > > > _________________________________________________________________ > > MSN Photos is the easiest way to share and print your photos: > > http://photos.msn.com/support/worldwide.aspx > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Sorry, I have had good readings on my lab reports for a year and a half and I still get very tired. I was told by Dr Czaja at the Mayo Clinic that it is part of the AIH. Also depression. I know when to stop and take a nap or just sit and do something like read, knit etc. I know that it helps then trying to push yourself all the time. I also went into remission after I went on disability when I wasn't under any stress. Home stress is under control. My husband and daughter understand... Sue/AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Dear Sue, I am sorry that you suffer from fatigue, but I am glad you responded to my email. I have felt very down ever since my biopsy even though the results were positive. I feel like there is something wrong with my character in that I am not supposed to be feeling this fatigue, yet I still am. Even though it wasn't stated outright, I got the impression from my nurse that "Your liver is just fine....there is no reason aside from laziness that you should be feeling this way." I also suffer from sleeplessness, joint pain, and some painful needle-stick pains and when I brought these to my doctor's attention, he had no explanation and really didn't seem too concerned about it. But it concerns me because I don't want ten years from now to discover that I have some nerve disorder that is no longer treatable since it was never diagnosed. How do you go into your Dr's office and tell him that he doesn't know his stuff if he can't help you or even pay attention to your symptoms. Sometimes I wonder if I am a hypochondriac or something since so many of my symptoms just have no medical explanation. Anyways, thank you for your response...at least I don't feel like I am the ONLY one out there who is so tired all the time.! >From: ROSELLE50@... >Reply- > >Subject: Re: [ ] >Date: Tue, 3 Sep 2002 12:47:20 EDT > >Sorry, I have had good readings on my lab reports for a year and a half and I >still get very tired. I was told by Dr Czaja at the Mayo Clinic that it is >part of the AIH. Also depression. > >I know when to stop and take a nap or just sit and do something like read, >knit etc. I know that it helps then trying to push yourself all the time. >I also went into remission after I went on disability when I wasn't under any >stress. Home stress is under control. My husband and daughter understand... > >Sue/AIH Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Hi, i just wanted to say i`ve been on disability for 3 years now with aih, i also have gynaecological problems, and depression. I didn`t think i would get it, but got medium rate disability with my first application. I live in England, which might make things a bit easier, but, it is still hard to get it. I definately think the fatigue and depression helped. I also live on my own, and when i`m ill, i find it hard to go out shopping etc... good luck jacqui >From: "savedbybunnies" >Reply- > >Subject: [ ] >Date: Mon, 02 Sep 2002 23:08:33 -0000 > >Dear : >I haven't yet applied for disability yet, but have been researching >it here and there. I joined a group for disability in and it >has helped me in getting past my intimidation factor for applying. I >will have to approach this next step within the next couple of >weeks. I've discovered a major component for acceptance is >depression and fatigue. Of course most of us have that and a lot of >us are being treated for it. > >As far as the quadrant pain goes...most of our dr.s tell us the same >thing you heard. But we have it nontheless. My dr. put me on Nexium >for it. He said esophagus inflammation can cause quadrant pain. I >doubted it, but tried it anyway and it worked! This group is great >for maintaining your sanity. You'll find that a good portion of us >experience symtoms that the dr.s refuse to acknowledge. It's a shame >more dr.s don't take advantage of these sites to gain insight! > >Anway, please feel free to email me personally if you need to talk. >Hugs, >Rhonda/TN > > > > > Dear Rhonda and Debby, > > > > I have currently been diagnosed with AIH and Lupus along with >fibromyalgia. > > I wake every night with night sweats, run a constant temperature, >have hot > > flashes and itch all over. I also ache everywhere. I have not >been able to > > work for the last month and am very scared about my finances and >my > > diagnosis. > > > > I am also contemplating applying for disability can you give me >some tips or > > let me know how I need to proceed. Like you said it is alot less >than my RN > > salary, but is better than nothing. I had never heard of >autoimmune > > hepatitis until my doctor thought I had it. Since then I have had >at least > > one major test a week. I have upper right quadrant pain and they >say AIH > > doesn't cause pain. I had an EGD, ERCP, liver biopsy, and >colonoscopy. I > > am so tired of tests and so tired of feeling so awful!! > > > > Thanks for any information that you can give me or support. > > > > > > > > > > >From: "savedbybunnies" > > >Reply- @y... > > > @y... > > >Subject: [ ] Re: Some feedback please > > >Date: Mon, 02 Sep 2002 05:33:51 -0000 > > > > > >Dear Debby: > > >I don't know if you are currently on disability or not, but I do > > >know that another diagnosis will help your case in that regard. >Just > > >a thought. > > >Hugs, > > >Rhonda/TN > > > > > > > > > > > > > _________________________________________________________________ > > MSN Photos is the easiest way to share and print your photos: > > http://photos.msn.com/support/worldwide.aspx > MSN Photos is the easiest way to share and print your photos: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Hi: I did tell one of my doctors that she didn't seem to pay enough attention when I went every other week to see her. She didn't take it too well and when I asked to be refereed down to the Mayo she was not happy and told me not to bother to come and see her again. I told that was fine. I was not the only patient that has trouble with her. The nurse should not be telling you how you should feel. They look at us and the they there is nothing wrong with her. I had a nurse once ask me if she could catch AIH from me. DAH! Tell your doctor how you feel and then go to another doctor if he isn't willing to help Sue/AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Are you taking prednisone? You could have diabetes. Shireen >From: " Holly Ramnes " <hollydollyramnes@...> >Reply- > >Subject: Re: [ ] >Date: Tue, 03 Sep 2002 12:07:12 -0500 > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Dear Sue, I am sorry that you suffer from fatigue, but I am glad you responded to my email. I have felt very down ever since my biopsy even though the results were positive. I feel like there is something wrong with my character in that I am not supposed to be feeling this fatigue, yet I still am. Even though it wasn't stated outright, I got the impression from my nurse that "Your liver is just fine....there is no reason aside from laziness that you should be feeling this way." I also suffer from sleeplessness, joint pain, and some painful needle-stick pains and when I brought these to my doctor's attention, he had no explanation and really didn't seem too concerned about it. But it concerns me because I don't want ten years from now to discover that I have some nerve disorder that is no longer treatable since it was never diagnosed. How do you go into your Dr's office and tell him that he doesn't know his stuff if he can't help you or even pay attention to your symptoms. Sometimes I wonder if I am a hypochondriac or something since so many of my symptoms just have no medical explanation. Anyways, thank you for your response...at least I don't feel like I am the ONLY one out there who is so tired all the time.! >From: ROSELLE50@... >Reply- > >Subject: Re: [ ] >Date: Tue, 3 Sep 2002 12:47:20 EDT > >Sorry, I have had good readings on my lab reports for a year and a half and I >still get very tired. I was told by Dr Czaja at the Mayo Clinic that it is >part of the AIH. Also depression. > >I know when to stop and take a nap or just sit and do something like read, >knit etc. I know that it helps then trying to push yourself all the time. >I also went into remission after I went on disability when I wasn't under any >stress. Home stress is under control. My husband and daughter understand... > >Sue/AIH Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 In my town I live in is a very small town. I went into the hospital in January 2000 and when I got there and was answering the questions, the nurse told me that the nurses had never heard of AIH but my doctor had brought them a paper about it and the medications for it etc. I was very pleased that the doctor did this. It help them plus me. Sue/Wis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2002 Report Share Posted September 5, 2002 It's very unnerving to me because his nurse has always been very nice to me and we actually kind of chit chat when we talk about things other than the AIH. So it threw me a little when she seemed so exasperated with me. Oh well......guess its true that you don't know what someone is going through until you walk a mile in there shoes. And there are so few of us out there, not too many can sympathize. Thanks for your response! >From: ROSELLE50@... >Reply- > >Subject: Re: [ ] >Date: Tue, 3 Sep 2002 22:14:59 EDT > >Hi: > >I did tell one of my doctors that she didn't seem to pay enough attention >when I went every other week to see her. She didn't take it too well and >when I asked to be refereed down to the Mayo she was not happy and told me >not to bother to come and see her again. I told that was fine. I was not the >only patient that has trouble with her. > >The nurse should not be telling you how you should feel. They look at us >and the they there is nothing wrong with her. I had a nurse once ask me if >she could catch AIH from me. DAH! > >Tell your doctor how you feel and then go to another doctor if he isn't >willing to help > >Sue/AIH Chat with friends online, try MSN Messenger: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Dear : Sorry I haven't responded sooner, I haven't been feeling well lately. As far as info. sites, I haven't found anything that beats the info. I get in this group. Matt Hastins's site is good for an overall view. Everyone is different in how they feel and respond to treatment. According to my labs, thus far, I'm responding very well to prednisone, but I feel like crap! I'm fatigued all the time, my joints hurt, I have very bad headaches most evenings, I'm starting to itch (that's new), as I've come down on the predinsone I'm nauseaus most of the time, and now my jaw hurts. It feels like it is out of alignment. I can't clench my teeth without it hurting under my ear. Very Weird. I have occasional quadrant pain now, but mostly acid reflux (if in fact one has anything to do with the other). This disease just takes adjustment and patience. It's not like the flu that you can take some medication and feel better. I've learned that the liver really controls so much more than we ever imagined including moodswings. I do believe it will get better with time, but you have to learn to adjust and fight the battles you can one at a time. Very few, if any of us, are the people we were before this disease. I do believe that many of us have gained a greater insight and appreciation that was lacking before. Don't become depressed because you can't do the marathon housecleaning like you used to...be happy you can wash the dishes and fold some towels...maybe tomorrow you might can mop the floor. Just take baby steps and be sure to get plenty of rest. That is the best medicine right now. Hugs, Rhonda/TN > > > Dear Rhonda and Debby, > > > > > > I have currently been diagnosed with AIH and Lupus along with > >fibromyalgia. > > > I wake every night with night sweats, run a constant temperature, > >have hot > > > flashes and itch all over. I also ache everywhere. I have not > >been able to > > > work for the last month and am very scared about my finances and > >my > > > diagnosis. > > > > > > I am also contemplating applying for disability can you give me > >some tips or > > > let me know how I need to proceed. Like you said it is alot less > >than my RN > > > salary, but is better than nothing. I had never heard of > >autoimmune > > > hepatitis until my doctor thought I had it. Since then I have had > >at least > > > one major test a week. I have upper right quadrant pain and they > >say AIH > > > doesn't cause pain. I had an EGD, ERCP, liver biopsy, and > >colonoscopy. I > > > am so tired of tests and so tired of feeling so awful!! > > > > > > Thanks for any information that you can give me or support. > > > > > > > > > > > > > > > >From: " savedbybunnies " <rbsteff@h...> > > > >Reply- @y... > > > > @y... > > > >Subject: [ ] Re: Some feedback please > > > >Date: Mon, 02 Sep 2002 05:33:51 -0000 > > > > > > > >Dear Debby: > > > >I don't know if you are currently on disability or not, but I do > > > >know that another diagnosis will help your case in that regard. > >Just > > > >a thought. > > > >Hugs, > > > >Rhonda/TN > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > MSN Photos is the easiest way to share and print your photos: > > > http://photos.msn.com/support/worldwide.aspx > > > > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Dear , Depressed you say? You have AIH? Surprise, surprise! Actually, many of us are on anti-depressants because the fatigue and stress caused by our illness does cause us to need them. I guess when I went crying to every appt ( and there were lots right then) the dr. finally asked if I thought I might need a little antidepressant. I was at the point of accepting anything that might help and it sure did. It helped me and my family! So if you need them great, if not, great! Just make sure your needs are being met. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 In einer eMail vom 05.01.04 15:44:23 (MEZ) Mitteleuropäische Zeit schreibt szukidavis@...: > In a message dated 1/5/04 7:05:12 AM Eastern Standard Time, > TVA12082208@... writes: > > > > , > > This is typical for allergy to gluten (gliadin). The second is also called > > " paradoxic sprue " or " atypical course of sprue " . > > Katharina > > > > Katharina, > I have the same thing but there is no sign of allergy to gluten. Couldn't > there be other reasons? > > > > , I agree that there are most of the time more than one causes to a symptom. But in paradoxic sprue you have no lab findings, but the disease is there nevertheless. You can make your own test if you had a suspicion that you react with allergy to wheat. You need to do this test longer than four week each course, as the first reaction to the agent gliadin can be delayed for two weeks. You need an on - off - on design. 1. course) Eat your normal diet including all kinds of wheat products for four weeks and do not forget to protocol any foods and symptoms. 2. course) Avoid ANY intake of wheat (mind ground spices, instant coffee, baking powder, processed foods etc.), replace wheat flower by spelt flower (I know spelt contains a reduced amount of gliadin, compared to wheat, but is not glutenfree. But most people just run away, if they have to renounce to anything without flour). Protocol all the foods and improvements. 3. course) after four weeks start the " normal " wheat containing diet again. Protocol closely and do not draw conclusions before two weeks on the old diet again. The criterion is not the lab results, but whether you feel vigorous or have undesirable symptoms with or without the wheat products. Some lab tests are just not accurate enough. Sometimes it is the test materials themselves, sometimes the labs, sometimes unknown variables in the patient her/himself that lead to the inaccuracy. It is only worth while to do such a design with foods that work on a systemic level, or who would spend a trimester on such a procedure. Yet, it might provide you with profound insight in how your body system works well and you feel real good! Best regards, Katharina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 In einer eMail vom 05.01.04 15:44:23 (MEZ) Mitteleuropäische Zeit schreibt szukidavis@...: > In a message dated 1/5/04 7:05:12 AM Eastern Standard Time, > TVA12082208@... writes: > > > > , > > This is typical for allergy to gluten (gliadin). The second is also called > > " paradoxic sprue " or " atypical course of sprue " . > > Katharina > > > > Katharina, > I have the same thing but there is no sign of allergy to gluten. Couldn't > there be other reasons? > > > > , I agree that there are most of the time more than one causes to a symptom. But in paradoxic sprue you have no lab findings, but the disease is there nevertheless. You can make your own test if you had a suspicion that you react with allergy to wheat. You need to do this test longer than four week each course, as the first reaction to the agent gliadin can be delayed for two weeks. You need an on - off - on design. 1. course) Eat your normal diet including all kinds of wheat products for four weeks and do not forget to protocol any foods and symptoms. 2. course) Avoid ANY intake of wheat (mind ground spices, instant coffee, baking powder, processed foods etc.), replace wheat flower by spelt flower (I know spelt contains a reduced amount of gliadin, compared to wheat, but is not glutenfree. But most people just run away, if they have to renounce to anything without flour). Protocol all the foods and improvements. 3. course) after four weeks start the " normal " wheat containing diet again. Protocol closely and do not draw conclusions before two weeks on the old diet again. The criterion is not the lab results, but whether you feel vigorous or have undesirable symptoms with or without the wheat products. Some lab tests are just not accurate enough. Sometimes it is the test materials themselves, sometimes the labs, sometimes unknown variables in the patient her/himself that lead to the inaccuracy. It is only worth while to do such a design with foods that work on a systemic level, or who would spend a trimester on such a procedure. Yet, it might provide you with profound insight in how your body system works well and you feel real good! Best regards, Katharina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 In a message dated 3/22/04 7:01:29 PM Eastern Standard Time, TVA12082208@... writes: > I forward them to AOL spamkiller. > Peace, > Katharina > I blocked the address. Quote Link to comment Share on other sites More sharing options...
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