Guest guest Posted December 29, 1998 Report Share Posted December 29, 1998 Hello : Welcome to the group! It sounds like you're having a tough time of it right now. My daughter is adopted (from Columbia, SA). She was 1 yr old when we adopted her; she is 13 now. She is a joy and the love of my life. I'm sure if you decide to adopt, it will be the same for you. Mitch ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 1999 Report Share Posted March 21, 1999 I'm sorry if I missed something, but what is the " meth " trial? Love, ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 1999 Report Share Posted March 21, 1999 Hi Craig, Welcome to our group. My name is Gracie, my husband, Ed has UC, PSC and Cirhossis. He has had UC for about 16 years, PSC for about 6. We, too go to NE Medical Center. We see Dr. Kaplan, and Dr. Young-Mee Lee. Ed was on Methotrexate for a few years, but, last year we started trying to have a baby and he got off of it. His disease has progressed recently. Last Fall he underwent his first ERCP dilation to open the bile ducts. They do this if the ducts get too blocked. You can usually have this done regularly with minimal problems and live pretty normally. Ed's blockage was in a spot where they couldn't get to, so they won't be doing that any more. He was then evaluated and accepted for transplant and here we wait for 2 years. He has experienced some swelling in his belly and legs, but that is not a problem right now. I'd be happy to share more of our story with you if you'd like. Email me at Krooner1@.... Gracie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 1999 Report Share Posted March 21, 1999 Craig & Gracie, My doc is also Dr. Young-Mee Lee. I really think she is great. She is doing ERCP's now every eight weeks on me, and it has made a difference in lowering the cholangitis bouts and time I have to spend in the hospital. I had hoped I could be in the meth trial, but my ducts were too far gone. I've been on NEMC's tx list for one year, now. I know that another NEMC PSC patient, Donna Kaiser (she's with Dr. Kaplan), told me about some research with an MIT prof relating to attempting to find the cause of PSC...seems he is trying to find out if it is bacteria related. If during an ERCP, Dr. Lee can extract some bilirubin, it can be sent over to MIT to see if it contains a particular type of bacteria. I keep forgetting to ask Dr. Lee about this when I have the ERCP's, but I go back April 10 for my next one, so I'll try to remember. I thought you'd like to know about this so you can decide if you want your bili analyzed.. Also, there's a support group that meets in Nashua, NH once a month for those of us who are on the tx. list, or are waiting. If you want info about this group, E-mail me directly, and I'll give you info. Gracie, it would probably be helpful if you and your husband got to one of these meetings. I know it meant the world to me to see how active and healthy those who had already had the transplant were, and to hear their tx. stories. DiNapoli at NEMC has info about this group, also. He's the one who told me about them. Craig, say " Hi " to for me...we communicated several times last year thru E-mail. Take care, krooner1@... wrote: > Hi Craig, > > Welcome to our group. My name is Gracie, my husband, Ed has UC, PSC and Cirhossis. He has had UC for about 16 years, PSC for about 6. We, too go to NE Medical Center. We see Dr. Kaplan, and Dr. Young-Mee Lee. Ed was on Methotrexate for a few years, but, last year we started trying to have a baby and he got off of it. His disease has progressed recently. Last Fall he underwent his first ERCP dilation to open the bile ducts. They do this if the ducts get too blocked. You can usually have this done regularly with minimal problems and live pretty normally. Ed's blockage was in a spot where they couldn't get to, so they won't be doing that any more. He was then evaluated and accepted for transplant and here we wait for 2 years. He has experienced some swelling in his belly and legs, but that is not a problem right now. > > I'd be happy to share more of our story with you if you'd like. Email me at Krooner1@.... > > Gracie > > ------------------------------------------------------------------------ > eGroups Spotlight: > " drumkeeranfolk " - Irish folk stories and the Drumkeeran Family. > http://offers./click/243/1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 1999 Report Share Posted March 21, 1999 , It is an experimental trial of methotrexate to see if it can slow down the progress of psc. Dr. Kaplan and Dr. Lee at New England Med are running the trial currently. As Dr. Lee explained it to me, it is for those who are in early to mid-stage PSC. Dr. Kaplan published an article in the New England Journal of Medicine approx 2 yrs. ago (maybe it was an editorial opinion, I'm not sure), in which he discussed the possibility the methotrexate might have an effect on PSC. Maybe Craig would know more about this. WYBEAR21@... wrote: > I'm sorry if I missed something, but what is the " meth " trial? > Love, > > > ------------------------------------------------------------------------ > eGroups Spotlight: > " Loads " - A " truckstop " support group for trucker families. > http://offers./click/243/3 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 1999 Report Share Posted March 22, 1999 Roy, Welcome to the group! I am very curious about a statement that you made. You said that will have a longer wait because she has type O blood. This is the most common blood type. Why would that be to her disadvantage? Is it because O is the universal donor, but can only receive O blood? I have AB, so I am a universal recipient. Dan On Saturday, March 20, 1999 8:51 PM, Roy Toutant [sMTP:toutant@...] wrote: > Hello to all. > > I just joined this group a few days ago. At least I think I did. > > My name is Roy Toutant, my wife has PSC. I have found the internet to > be a great source of information and it is very interesting to hear from so > many people with PSC. Most doctors don't see this disease very often and > don't understand it. It took about a year to intially diagnose her with > PSC, the only initial symptoms were liver function tests that were way out > of range. > > From what I can tell, patients with this disease have widely varying degrees > of illness. > > is 41 and has known she has PSC for 10 years. She has been listed for > liver transplant for over 2 years as a blood type O status 3 which means she > is probably going to have to wait a lot longer or get sicker before anything > happens. She also has had UC for 25 years which appears to be pretty common > among PSC patients. > > She has had 2 bad incidents of GI bleeding but none recently due to > treatment which seems to be helping. > > I'll send along the symptoms list later, but it is lengthy. So is the drug > list. > > It is interesting that some patients here complain about upper right > quadrant pain, since I think our local GI/Hepatologists don't consider that > a normal PSC symptom. But does have this off and on. I previously > assumed it was related to prior biopsies or some other muscular problem. As > far as I know, the liver organ itself does not have any sensation of pain. > > Thanks, Roy T. > > > ------------------------------------------------------------------------ > eGroups Spotlight: > " Fiddlers " - For people who play and who want to learn. > http://offers./click/243/0 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 Welcome Dave, I too have UC. First dx in Oct. 95 and PSC in Jan 96. I have a question for you and all the members. Has anyone with PSC ever been told that they have Gilbers Syndrome, (sp)? For years I have had a slightly elevated bilirubin, 1.8-2.1, and the Drs. couldn't find anything wrong with me and always dx me with Gilbers. Gilbers, I've been told, is found a lot of times in people of Mediterranean decent. Since most of my relatives are from Scotland and England, I'm not sure if that is true in my case. But my Uncle says we have black Dutch in our background. About 15 years ago one Dr. did send me in for a sonagram at St. Agnes in Baltimore. They did discover some sort of blockage at the liver but thought it might be a gallstone but never did anyting after that. The Dr. didn't do any follow up test and I was sent home. I didn't have any other symptons, no pains, no jaundice. I did eventually have a gallbladder prolbem and had it removed about 9 years ago. Since I have been dx with PSC and put on Actigall, my bilirubin is down in the normal range. Any comments? Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 1999 Report Share Posted August 31, 1999 Hi Dan! I have the URQ pain and have had it for 3 years now. It is the most, at this point, the most horrible thing to happen to me. My pain is an unbelievable dull, aching pain which brings me to my knees. I have been to my docs, of course, and a pain-management specialist. The specialist said he was so sorry but he couldn't do anything for me that Percoset would be what he would recommend (which I am on). He said with such uncontrollable pain, however, he would really recommend morphine! I got very upset and said that I wouldn't take morphine unless I was ready to die and the only relief I could get was morphine. Not now and I hope never will I take morphine. I was also given oxicontine. The thing is so dangerous. When I put it on (only twice), I felt like I could whip the world -- I felt absolutely wonderful! I was visiting my son in Ohio who is a doctor and before we went out Saturday on an excursion I took one of these. I literally didn't stop. We went to Yellow Springs, Ohio where Antioch College is and the town was wonderful. I walked and walked and walked! The day was absolutely beautiful. My son kept telling me to sit down and rest. I told him I just couldn't do that because this was the first day in 3 years that I have felt like I used to -- although I am now 56, until I got this disease I functioned like a 20-year-old -- endless energy! I was fine that evening and then it hit! The pain came back with a vengeance. I suffered so bad and my son was apologizing to me. I told him that it was worth the few hours I had feeling like I used to and it was. When I returned home and about 2 days later I started hemorrhaging from the mouth. This was from the multiple ulcers I have had for over a year now. I can sympathize with anyone with PSC who has to live like this. It isn't good, but I look around and see people so much worse off than I am. After all, I can take a pain killer and most of them can't. Although I have been very down for the last three days, I feel guilty about being depressed. I think of the 4 boys on this site that have this " devil " disease and I feel more guilty. I just realized that I have gone on and on about me and this is probably the first time I have interacted with you on the site. Forgive me. I don't know why I did this to you, but it just started pouring out. Take very good care of yourself. Hugs, Biddy Re: new member > > Thank you to all of you out there for each other. I hope I can help >someone > someday that this is new to PSC, but for now I am learning how to >deal with > all of this through you. I am having some kind of attack of pain in >my URQ. > Saturday it sent me to the hospital and today I waited to see if it >would > pass but did call my GI. I am instructed to go to the hospital if it >reoccurs > and I will see him tomorrow at 12:30 if not before. I can't even >explain this > pain, it imobolizes me I can move or talk or do ANYTHING but wait >for it to > pass it is in my side and goes across my upper stomach when the >attack is > happening, otherwise it is more a constant pain that I can handle at >other > times. Please let me know if anyone else experiences this before I >go to the > doctor tomorrow and he tells me... I shouldn't be feeling this way! >I do feel > this way!!! No I want him to tell me WHY!! > Thanks Vicki > > >------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications > > > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 1999 Report Share Posted August 31, 1999 Vicki, Welcome. I'm glad to see you found your way here. Like I told you, this is a great group and you'll be happy you joined. Gracie krooner-@... wrote: original article:/group//?start=3825 > Hi all, > I think I finally figured out how to post here, time will tell! > I have been in contact with and one other person ( sorry I forget your name) but thank you for welcoming me so nicely. I tend to get on line when I am feeling the worst, trying to find anything and everything out I can. Which was the same old thing ( a discription of PSC) until God finally led me to all of you! I was diagnosed 3 months ago after jaundicing and itching and having urine the color of coke. An ultrasound and catscan showed nothing, the GI I went to WAS SURE that I had a stone in my bile duct. My blood work had gotten better even before the ERCP but we went ahead with the procedure. ( I don't know how much better) Well there was no stone and I was diagnosed with 95% assurity with PSC. I was put on Actigall and given a base line cancer blood level, which came back " good " . I got very sick for two weeks after " a ton of bile " as the doc said, was released. I asked to go off of the Actigall as I was feeling so nauseas and thought it might be causing it. The doc agreed since my blood work " looked better than it should " . I have had a lot of bad days since all of this started. My blood work still continues to look good but I feel like I have a gallbladder (which I don't) most days. I didn't have this problem til diagnosed although occationaly I would tell my husband that it felt like I still had my gallbladder, that feeling would pass after a few minutes. It took 7 years for the doctors to take out my gallbladder (5 years ago)and after having every test coming back normal during that time and every doctor acting like I was either a hypocondrite or a mental patient, finally one of the surgeons did a different test that showed my gallbladder did not function right - they don't usually do surgery for this but since I had so many problems he di. MY GALLBLADDER WAS FULL OF TINY STONE! I think all of that was connected to this PSC and I just pray that they listen to me about what is going on with my body now. Sorry to rant and rave, it feels so good to talk with others that know some of the things I am going through. I will close now, if I haven't put all of you to sleep by now. LOL Thank you for listening. Thank you for your stories, I will be looking forward to chating with all of you, Sorry so long I will not be so windy next time,Vicki > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 1999 Report Share Posted August 31, 1999 Biddy, Don't be sorry, if I understand this site THATS what it is for!!!! I was devestated at first then ok for a coulpe of months now the depression. I can see it is going to b e a cycle. Hang in there I can tell there is a lot of love and caring people here. Love ya, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Hi Jeanette, Welcome, go to www.copingandprevailing.com If you cannot afford to pay for the book send me your mailing address and I will send it to you. Regards, Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2003 Report Share Posted December 26, 2003 Welcome . Kim in Nebraska New member > Hi, > My name is . I was first diagnosed in January of 2001. Another > Neurologist later reversed that diagnosis. After having massive > amounts of problems ranging from memory loss, speech problems, lack > of coordination, permanent losing almost all feeling in my right > hand, vision problems(blurs and double vision). loss of feeling in my > legs on and off. I went in to the doctor because my right leg became > heavy as all get out and I was unable to drive. They did another LP > and MRI and rediagnosed me. I have applied for SSDI and have been > told I have a good chance because I have three of the qualifiers. > > Sharon asked that I mention that My sister and I have both been > diagnosed with MS. Which I have been told is a rarity. Her neuro > wants to study and care for us both but until I get some health > insurance again he'll have to wait. My sister is in more pain than I > am. She is regularily on Pain meds and has no cognitive or speech > problems. nor has she lost the use of any of her limbs. she has 8 > brain lesions and 4 spinal lesions. I have 17 brain lesions and no > spinal lesions. > > I am 31 and my sister is 34. We moved from WI to CA when I was 11. > Her neuro thinks that maybe the change in climate maye have triggered > both of our MS. > > I am sorry if this seems to rant with no general direction as it make > no sense to me now. > > My sister is married with 1 child and 1 on the way. I am a single > parent with one daughter and an absentee mother. > > Well I can't think of anything else to write. Have a Merry Christmas. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2004 Report Share Posted January 23, 2004 Welcome to the list! ~~~~~~~~~~~~~~~~~~~~~~~~ Thanks for the welcome , from "The Old North State" <snicker> Yeah, I didn't change anything up much here from the bbs on AOL..... I get stuck in a rut sometimes. : ) ,.• ´¨¨)) * ¸.•´ .•´¨¨))((¸¸.•´ ..•´ Alan *™ * ((¸¸.•´* in Alabama We have endured endless peaks of pain and valleys of loneliness; We havelost beloved's we could not live without; yet we have lived.-- Maya Angelou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 You are not the only one. Many of us have been told this, and come to realize it isn't true. Luckily, I do believe, or hope, they are getting better about not doing this. In most Cases, you Retether because of Scar Tissue. In some, their Lipoma grows back. I know it's hard, but it's just the nature of Surgery, Surgery forms Scar Tissue. There isn't anything out there that has been proven to prevent Retethering as of yet. Gortex hasn't worked like they thought it would. Good luck to you. Me Nebraska, USA mymocha@... > I'm terrified. Confused. I was originally told that this wouldn't > happen again. Now, I'm reading of people who've had it done (or > their kids have had it done) 5 and 6 times! Why does it retether? > How does a repaired " birth defect " re do itself? What can be done to > prevent it? I have read about Gor Tex (i think that's right), has > any heard any more about it? All I've heard is that it's been tried > in lab tests and was successful, but not tried on people. That was a > 1999 article on the web I just found. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Start by getting referred to a Pediatric Neurosurgeon. It's weird, but even on adults (I had surgery to correct tethered and split cord when i was 51) and it was done by a pediatric neurosurgeon. In northern CA, tethered cords are dealt with at Stanford, UCSF (Dr. Gupta) and Kaiser Oakland (Drs Pang and Zovickian). You can find the contact information for the pediatric neurosurgery departments at these institutions on their web sites. Information about tethered cords is available on the spina bifida association web site. Don't delay in getting referred to see a pediatric neurosurgeon about this problem. The fact that you are having pain is an indication that your condition needs to be addressed. And as my general practitioner told me when I was diagnosed: " This is not your fault and you are not a complainer. " > > Hello, > > After reading everyone elses symptoms I feel like a little bit of a > complainer. Here is where I am: > > At birth (1970) I had a small growth on my back with a hair in the > center that the doctors called a blood vessel tumor. They did > surgery and when my parents asked the doctors just said " it was deep > but he is ok " . My parents asked how deep and the doctors just > said " really deep " . I went on ok from there I do remember my > parents telling me I had to wear supportive shoes when I was young > to correct some problem with my feet. Anyway from there I was fine > no problems but after reading a little about other peoples cases I > do notice that the joint for my big toe is large and I do have a > tall arch. > > Anyway ... In Aug '04 I was assaulted at work and injured my back. > It would get worse when I was at work and better on the weekends > when I rested. This went on for awhile until I couldn't work and I > went to the doctor. He said it was a back strain and put me off > work for about 1 1/2 months. It seemed to get better with lots of > rest and I went back to work. About a week later I woke up one > morning with extreme lower back pain. I thought I could just walk > it off but it only got worse when I stood up. I went to the doctor > and he said it was just the same strain but he refered me to a local > back doctor. After being off for another 1 1/2 months and after > physical therapy I was feeling a little better and I went back to > work with some restrictions. The pain started to get worse as they > stepped up the physical therapy. I stopped therapy and went back to > the doctor and requested an MRI. I doctor reluctantly said he would > order one. I finally got it approved by workers comp and the MRI > showed a tethered cord and that the cord was abnormally long. > > Since then the pain has gotten a little worse and spread from just > lower back pain to sporadic shooting pain in my legs. The pain is > tollerable but after working for 8 hours I'm pretty much spent and I > am still on modified duty at work. I just went to the doctor again > and he really doesn't know anything about tethered cords so I asked > him to refer me to someone else. He didn't know who to refer me to > so he did a general referal to Stanford, UCLA, or Loma . > > I have been trying to find a Neurosurgeon in CA but I can't seem to > get through to anyone at any Neurosurgeon's office to find out if > they even have any experience in this area. > > Can anyone give me any ideas of where to start? > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., > rick@...                           > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 >our son just had his spinal cord released by dr. pang and zovickian 2 weeks 3 days ago. If you have kaiser, generally after being referred to a surgeon (the surgeon should order an mri) they will refer you to the neuro-surgery dept. If you do have kaiser, they are WONDERFUL and I cannot speak highly enough about them, kaiser, and their neuro-surgery team. good luck, I hope everything works out for you soon! If you are having signs/pain/symptoms, etc... you need to get the issue addressed asap. Nerve damage is irrepareable they say, but surgery generally helps the situation (and atleast stops further deterioration..) but it is definitely time sensitive... lisa and riley > Start by getting referred to a Pediatric Neurosurgeon. It's weird, but > even on adults (I had surgery to correct tethered and split cord when i > was 51) and it was done by a pediatric neurosurgeon. In northern CA, > tethered cords are dealt with at Stanford, UCSF (Dr. Gupta) and Kaiser > Oakland (Drs Pang and Zovickian). You can find the contact information > for the pediatric neurosurgery departments at these institutions on > their web sites. > > Information about tethered cords is available on the spina bifida > association web site. > > Don't delay in getting referred to see a pediatric neurosurgeon about > this problem. The fact that you are having pain is an indication that > your condition needs to be addressed. > > And as my general practitioner told me when I was diagnosed: " This is > not your fault and you are not a complainer. " > > > > > > >> >> Hello, >> >> After reading everyone elses symptoms I feel like a little bit of a >> complainer. Here is where I am: >> >> At birth (1970) I had a small growth on my back with a hair in the >> center that the doctors called a blood vessel tumor. They did >> surgery and when my parents asked the doctors just said " it was deep >> but he is ok " . My parents asked how deep and the doctors just >> said " really deep " . I went on ok from there I do remember my >> parents telling me I had to wear supportive shoes when I was young >> to correct some problem with my feet. Anyway from there I was fine >> no problems but after reading a little about other peoples cases I >> do notice that the joint for my big toe is large and I do have a >> tall arch. >> >> Anyway ... In Aug '04 I was assaulted at work and injured my back. >> It would get worse when I was at work and better on the weekends >> when I rested. This went on for awhile until I couldn't work and I >> went to the doctor. He said it was a back strain and put me off >> work for about 1 1/2 months. It seemed to get better with lots of >> rest and I went back to work. About a week later I woke up one >> morning with extreme lower back pain. I thought I could just walk >> it off but it only got worse when I stood up. I went to the doctor >> and he said it was just the same strain but he refered me to a local >> back doctor. After being off for another 1 1/2 months and after >> physical therapy I was feeling a little better and I went back to >> work with some restrictions. The pain started to get worse as they >> stepped up the physical therapy. I stopped therapy and went back to >> the doctor and requested an MRI. I doctor reluctantly said he would >> order one. I finally got it approved by workers comp and the MRI >> showed a tethered cord and that the cord was abnormally long. >> >> Since then the pain has gotten a little worse and spread from just >> lower back pain to sporadic shooting pain in my legs. The pain is >> tollerable but after working for 8 hours I'm pretty much spent and I >> am still on modified duty at work. I just went to the doctor again >> and he really doesn't know anything about tethered cords so I asked >> him to refer me to someone else. He didn't know who to refer me to >> so he did a general referal to Stanford, UCLA, or Loma . >> >> I have been trying to find a Neurosurgeon in CA but I can't seem to >> get through to anyone at any Neurosurgeon's office to find out if >> they even have any experience in this area. >> >> Can anyone give me any ideas of where to start? >> >> >> >> >> >> Not Medical Advice. We Are Not Doctors. >> Need help with the list? Email >> kathy@...,michelle@..., >> rick@...                           >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 I guess I should have added that I'm in central CA so I can go to northern or southern CA. I don't have Kaiser. Everything is being covered by workers comp for now so I can pretty much shop for the best doctor. My Workers Comp attorney said to find a Doctor and he would get the referal taken care of. So Stanford is a good place to start in N CA? What about Ceders Sinai in S CA? Anyone have any specific Surgeons in CA thay have had good luck with? OH and my real name is Todd. Thanks you all have been a big help already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 I live in northern CA and have Kaiser. I learned a bit about Stanford and UCSF when I sought a second opinion. Stanford was a bureaucratic nightmare, after countless phone calls, lost faxes, tons of misinformation, I never succeeded in getting an appointment for a second opinion. UCSF was much more straightforward - go to their web site, find pediatric neurosurgery and call the number listed. Dr. Gupta there is one of the neurosurgeons who deals w/tethered cord and his reputation is good. Don't delay. > > I guess I should have added that I'm in central CA so I can go to > northern or southern CA. I don't have Kaiser. Everything is being > covered by workers comp for now so I can pretty much shop for the best > doctor. My Workers Comp attorney said to find a Doctor and he would > get the referal taken care of. > > So Stanford is a good place to start in N CA? What about Ceders Sinai > in S CA? Anyone have any specific Surgeons in CA thay have had good > luck with? > > OH and my real name is Todd. > > Thanks you all have been a big help already. > > > > > > Not Medical Advice. We Are Not Doctors. > Need help with the list? Email > kathy@...,michelle@..., > rick@...                           > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Dear Tommi, I just accidentally sent you a blank message.....sorry about that. Anyway, we just saw another doctor for a second opinion this week and he basically disagreed to the tethered cord diagnosis. His recommendation was to monitor her scoliosis since he was not convinced the TC was the cause for the scoliosis since she was not exhibiting any other symptoms. The question that I have regarding your daughter...at the time she was diagnosed with tethered cord what symptoms did she have? There is such a gray area with diagnosis for TC and it can be somewhat confusing when you have two doctors telling you different things. I hope things are okay with your daughter. Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Welcome to the group barefoot. I am also fairly new.. sorry about your health issues. Hugs, Babs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Thank you for your words of wisdom! Even though I know how my mom and sister are, I still find myself being sucked into their world. I am getting better, though. I'm glad I found this online support group. It really helps knowing that I am not the only one dealing with these issues. > > > > Last spring I started seeing a theraptist because I couldn't deal > > with my mom anymore. I felt sick to my stomach every time I spoke > > to her. After two sessions my therapist encouraged me to read > about > > BPD. She strongly believes my mother has BPD, although my mom has > > not been diagnosed with this. After extensive research, I believe > > my mom and possibly my sister both have BPD. > > > > My entire life she has accused me of crazy things: not loving her, > > wanting to be with my friends more than her(I was only a child), > > crying harder at my grandpa's funeral than I did at grandma's, > > loving my in-laws more than her, and many more things. She twists > > many things, changes stories, doesn't remember things the way they > > really happened. My whole life I thought I was crazy and couldn't > > understand why there was so much DRAMA in my life. Now I know. > My > > mom creates drama if it's not there. > > > > Anyway, this is really affecting my life, my husband, and my three > > young children. We are seriously considering moving to another > state > > just so we don't have to deal with her on a daily basis. All of > > our family is here (midwest) but we are starting to feel it would > be > > easier to not be so close to family. Just when we think things > > are fine, her or my sister will call up with horrible accusations, > > swear at me, yell, and hang up. It is not healthy. I would love > for > > them to get help, but neither one knows they have a problem. And > how > > would I tell them??? Before I knew my mom had this, I would tell > > her to go see a therapist. Told her she needed help. She said > she > > was seeing a therapist but I don't think she was. Both my mom and > > sister are on anti-depressants, but not seeking any other help (no > > therapy).Part of me feels guilty for wanting to move and get > away. > > Another part of me feels I deserve this - I've been deeling with > it > > for over thirty years and I am tired of it. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 I am a new member to the group and have been having difficulty emailing,so I hope this works. The emails I have received as being part of this group, have been a great comfort to me. I am so sorry we have all had an experience with a BP in our lives. My BP is my mother.I am back in therapy again, and have made some amazing discoveries. I know my BP mother's behavior was not normal and the painful moments she brought to me, actually my whole family were not normal. I so wanted validation for all of my feelings, especially the painful ones. I feel like this is the place I can come to get that validation and feel safe. All of you get it and it isn't an easy thing to get. So many of your stories, experiences and feelings, were and are mine. I know my BP mother will never change, but I know I can and will continue to change. I think that those of us that live in the NP world are the brave and fearless ones, we continue to love and hope despite the craziness and pain that can creep into are lives. Stay strong and at peace with whatever your decision is in how to cope with the BP in your life. We have all experienced such harsh words,actions and judgements from the BP in our lives, so let your decision be one that empowers you to love yourself. Only you know your journey and why you made the choice you did. These BP's in are lives will wear down our souls, until there is nothing left. Thank you for listening....I bless you all! Malinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Hi Mishell, I'm a new member too. Just last weekend, I came across 's work. I could have written what you wrote (for the most part) in your post below. I had an amazing shift last weekend! When I pinpointed my biggest " beef " about the whole drinking my complaint is that " He changes " ..I flipped it around and saw that Yes! I AM the one that changes!!! With each beer I see him grab from the frig., the more distant I became, yet I was (in my mind) accusing him of this very thing. Then the thought, who would I be without that thought " that he changes " ...well..BINGO..I would be more loving, I would see him as he truly is, someone that's doing the best they can with what they can, etc., etc. We have been married almost 21 years. How he's put up with me..well, I'm so appreciative that he has. He has never once really asked me to be someone I'm not and I have to laugh..I think that was my goal when we got married.shape him up (mold him into what I wanted him to be) LOL, when after all, he is perfect just the way he is and I truly love him like I always have, buried deep beneath the blame. It's surfaced and growing and it's a beautiful happening! Thanks for the opportunity to share a similar situation. Love, Tammy YOUR life is what YOU make it; make it a GREAT one and LIVE the LIFE you LOVE! Re: New Member Hi , I have not had a chance to continue in Byron 's book yet but to answer those questions: What bothers me most is wondering where he is and how drunk he is getting that leads to how much money he is wasting on it and buying other's drinks. Some of our friends ask me if I trust him. Well, I guess I dont on a number of accounts. He says he would never cheat on me but I dont think that is my worry. It is because of how the drinking makes him act and how other people see him and then think of me - like why are you with him? Stuff like that. I just want to find peace with the situation. He is at the point where he knows he needs to stop drinking and that is usually when it gets better, but it never completely goes away. I know that some people can stop drinking for a long period of time and maybe not ever take another drink like his Dad and his friend from college. So far, he has not been able to achieve that goal. Maybe that is what bothers me the most and I dont know if I want to live with that - but I dont want to give up either. We really love each other and have been together for 6+ years. He is amazing when he is sober. Anyway, thanks for the response and have a great weekend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Then the thought, who would I be without that thought " that he changes " ...well..BINGO..I would be more loving, I would see him as he truly is, someone that's doing the best they can with what they can, etc., etc. *****Each apparent individual, everywhere, all the time, is doing the best they can. Nothing else is possible. Even not Seeing this, not agreeing with, is it doing the best it can. Until this is Seen and integrated, however, there will be confusion. Quote Link to comment Share on other sites More sharing options...
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