Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Lea, I understand what you are saying. You have a doctor that understands the symptoms, and that is great for you. I have been fighting with this for 2 years, and my family has suffered from it. I go for surgery on April 2nd and I do not know if things will better or not for everything sounds so scary. My husband and I talked about everything, and then we gave it to GOD. I decided that all I needed to worry about was the recovery period and how much I was going to focus on getting back some of my life. With trust in God and Prayer we can go far. I am comfortable since I turned it over to God, along with I trust my doctor. I will pray for you and your family. I will tell you that this group is very supportive and very informative, they are wonderful, and I many times pull energy from them. God Bless Beverly new member > Hey all, > I have been reading your posts silently for about a month, I have wanted to > post my story as well, but am usually the type that doesn't like to voice my > problems. > I am a 39 year old mother of 6, till about the past year I was commonly > referred to as " super Mom, " I could paint a room, do 8 loads of laundry, work > my part time job, and make a home made dinner and have all the kids ready for > the day, and do anything else that came along. In November I started having > numb spots in my forearms, and was concerned as my father had serious artery > problems. My doctor had an MRI done on me to see if I had a pinched nerve in > my neck, what came up on the MRI was a diagnosis of Chiari, which she hadn't > heard of, she sent me to a Neurosurgeon who told me it wasn't anything to be > concerned about (5 mm) and that my numbness was probably due to carpal > tunnel, which he couldn't diagnose by that test where they put needles in you > with an electric(?) charge.(Ouchy!!!!) By January I was having headaches > about twice a week, and was horribly tired, I thought I had cancer or > something, I really felt like I was dying. I had to quit my job, and my > husband (my angel) pretty much took over everything around the house,(besides > his full time job) and with the exception of a few good days a month I have, > I can actually finish a project!!!! I called a neurosurgeon in town and > expressed my concerns and he had me come in the first of March. By now, I > have numbness in my thighs and arms, tired, headaches, neck and back aches, > and my speech pattern has been to say the least amusing at times. I also feel > the need to shudder as if I am cold, does anyone else have that? He looked at > my MRI and said although I am only 5 mm, the " hole " in my skull(?) where the > 5 mm is located is unusually small, which has made my Chiari symptoms more > visible. At any rate, I go back Monday as I had a brain MRI last week, he > said we will discuss the possibility of surgery then. Well, I am REALLY > scared, some of the postings have given me great hope, some have scared me to > death, as some members sound worse off as a result of the surgery. I am prone > to upper respiratory infections and am afraid of not being able to have a > swift recovery as my immune system isn't the greatest. And I guess I am > afraid in general to wake up and be worse off then I am now. I realize I am > not nearly as bad as most who post, and I truly wish you all the best, but as > I have progressively gotten worse in 5 months I wonder how much worse will I > get without the surgery? All I know is I love my family soooo much, I hate > to be putting them thru any of this, I hate even more hearing my littlest > ones saying, " let mommy rest, she doesn't feel good again " . I so want to be > like I used to be.......is there hope to be back to my old self after > surgery, or is what I have now irreversible neurological damage? > Thanking you in advance for my rambling, and best wishes to all, > Lea in FL > P.S I used to be a terrific speller, thank God for spell check!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Lea, I understand what you are saying. You have a doctor that understands the symptoms, and that is great for you. I have been fighting with this for 2 years, and my family has suffered from it. I go for surgery on April 2nd and I do not know if things will better or not for everything sounds so scary. My husband and I talked about everything, and then we gave it to GOD. I decided that all I needed to worry about was the recovery period and how much I was going to focus on getting back some of my life. With trust in God and Prayer we can go far. I am comfortable since I turned it over to God, along with I trust my doctor. I will pray for you and your family. I will tell you that this group is very supportive and very informative, they are wonderful, and I many times pull energy from them. God Bless Beverly new member > Hey all, > I have been reading your posts silently for about a month, I have wanted to > post my story as well, but am usually the type that doesn't like to voice my > problems. > I am a 39 year old mother of 6, till about the past year I was commonly > referred to as " super Mom, " I could paint a room, do 8 loads of laundry, work > my part time job, and make a home made dinner and have all the kids ready for > the day, and do anything else that came along. In November I started having > numb spots in my forearms, and was concerned as my father had serious artery > problems. My doctor had an MRI done on me to see if I had a pinched nerve in > my neck, what came up on the MRI was a diagnosis of Chiari, which she hadn't > heard of, she sent me to a Neurosurgeon who told me it wasn't anything to be > concerned about (5 mm) and that my numbness was probably due to carpal > tunnel, which he couldn't diagnose by that test where they put needles in you > with an electric(?) charge.(Ouchy!!!!) By January I was having headaches > about twice a week, and was horribly tired, I thought I had cancer or > something, I really felt like I was dying. I had to quit my job, and my > husband (my angel) pretty much took over everything around the house,(besides > his full time job) and with the exception of a few good days a month I have, > I can actually finish a project!!!! I called a neurosurgeon in town and > expressed my concerns and he had me come in the first of March. By now, I > have numbness in my thighs and arms, tired, headaches, neck and back aches, > and my speech pattern has been to say the least amusing at times. I also feel > the need to shudder as if I am cold, does anyone else have that? He looked at > my MRI and said although I am only 5 mm, the " hole " in my skull(?) where the > 5 mm is located is unusually small, which has made my Chiari symptoms more > visible. At any rate, I go back Monday as I had a brain MRI last week, he > said we will discuss the possibility of surgery then. Well, I am REALLY > scared, some of the postings have given me great hope, some have scared me to > death, as some members sound worse off as a result of the surgery. I am prone > to upper respiratory infections and am afraid of not being able to have a > swift recovery as my immune system isn't the greatest. And I guess I am > afraid in general to wake up and be worse off then I am now. I realize I am > not nearly as bad as most who post, and I truly wish you all the best, but as > I have progressively gotten worse in 5 months I wonder how much worse will I > get without the surgery? All I know is I love my family soooo much, I hate > to be putting them thru any of this, I hate even more hearing my littlest > ones saying, " let mommy rest, she doesn't feel good again " . I so want to be > like I used to be.......is there hope to be back to my old self after > surgery, or is what I have now irreversible neurological damage? > Thanking you in advance for my rambling, and best wishes to all, > Lea in FL > P.S I used to be a terrific speller, thank God for spell check!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2002 Report Share Posted March 24, 2002 Lea, I understand what you are saying. You have a doctor that understands the symptoms, and that is great for you. I have been fighting with this for 2 years, and my family has suffered from it. I go for surgery on April 2nd and I do not know if things will better or not for everything sounds so scary. My husband and I talked about everything, and then we gave it to GOD. I decided that all I needed to worry about was the recovery period and how much I was going to focus on getting back some of my life. With trust in God and Prayer we can go far. I am comfortable since I turned it over to God, along with I trust my doctor. I will pray for you and your family. I will tell you that this group is very supportive and very informative, they are wonderful, and I many times pull energy from them. God Bless Beverly new member > Hey all, > I have been reading your posts silently for about a month, I have wanted to > post my story as well, but am usually the type that doesn't like to voice my > problems. > I am a 39 year old mother of 6, till about the past year I was commonly > referred to as " super Mom, " I could paint a room, do 8 loads of laundry, work > my part time job, and make a home made dinner and have all the kids ready for > the day, and do anything else that came along. In November I started having > numb spots in my forearms, and was concerned as my father had serious artery > problems. My doctor had an MRI done on me to see if I had a pinched nerve in > my neck, what came up on the MRI was a diagnosis of Chiari, which she hadn't > heard of, she sent me to a Neurosurgeon who told me it wasn't anything to be > concerned about (5 mm) and that my numbness was probably due to carpal > tunnel, which he couldn't diagnose by that test where they put needles in you > with an electric(?) charge.(Ouchy!!!!) By January I was having headaches > about twice a week, and was horribly tired, I thought I had cancer or > something, I really felt like I was dying. I had to quit my job, and my > husband (my angel) pretty much took over everything around the house,(besides > his full time job) and with the exception of a few good days a month I have, > I can actually finish a project!!!! I called a neurosurgeon in town and > expressed my concerns and he had me come in the first of March. By now, I > have numbness in my thighs and arms, tired, headaches, neck and back aches, > and my speech pattern has been to say the least amusing at times. I also feel > the need to shudder as if I am cold, does anyone else have that? He looked at > my MRI and said although I am only 5 mm, the " hole " in my skull(?) where the > 5 mm is located is unusually small, which has made my Chiari symptoms more > visible. At any rate, I go back Monday as I had a brain MRI last week, he > said we will discuss the possibility of surgery then. Well, I am REALLY > scared, some of the postings have given me great hope, some have scared me to > death, as some members sound worse off as a result of the surgery. I am prone > to upper respiratory infections and am afraid of not being able to have a > swift recovery as my immune system isn't the greatest. And I guess I am > afraid in general to wake up and be worse off then I am now. I realize I am > not nearly as bad as most who post, and I truly wish you all the best, but as > I have progressively gotten worse in 5 months I wonder how much worse will I > get without the surgery? All I know is I love my family soooo much, I hate > to be putting them thru any of this, I hate even more hearing my littlest > ones saying, " let mommy rest, she doesn't feel good again " . I so want to be > like I used to be.......is there hope to be back to my old self after > surgery, or is what I have now irreversible neurological damage? > Thanking you in advance for my rambling, and best wishes to all, > Lea in FL > P.S I used to be a terrific speller, thank God for spell check!!!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Good Luck Sherry.....I am sure you will do a great job. Shari SMT Louisiana New member Hello all! I just wanted to say a quick hello, and thanks for allowing me to join. My name is Sherry and just started a course in medical transcription in November of 2002. I am going slow, but I love it! So many new things to learn! Sherry Student of VLC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Welcome to the group, Sherry. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Rennie My Home Page: http://www.renesue.com ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ New member > Hello all! I just wanted to say a quick hello, and thanks for > allowing me to join. My name is Sherry and just started a course in > medical transcription in November of 2002. I am going slow, but I > love it! So many new things to learn! > > Sherry > Student of VLC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Welcome to the group, Sherry. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Rennie My Home Page: http://www.renesue.com ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ New member > Hello all! I just wanted to say a quick hello, and thanks for > allowing me to join. My name is Sherry and just started a course in > medical transcription in November of 2002. I am going slow, but I > love it! So many new things to learn! > > Sherry > Student of VLC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 Welcome to the group, Sherry. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Rennie My Home Page: http://www.renesue.com ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ New member > Hello all! I just wanted to say a quick hello, and thanks for > allowing me to join. My name is Sherry and just started a course in > medical transcription in November of 2002. I am going slow, but I > love it! So many new things to learn! > > Sherry > Student of VLC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Welcome ! new member Hello, everyone, I'm a new member to this group as of 4/21/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Yes, I did already have it done a year ago. I was one of the very lucky ones who, with the help of Clomid(a fertility drug) got PG 3 months after my TR. Our baby is almost 2 months old. new member Hello, everyone, I'm a new member to this group as of 4/21/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Yes, I did already have it done a year ago. I was one of the very lucky ones who, with the help of Clomid(a fertility drug) got PG 3 months after my TR. Our baby is almost 2 months old. new member Hello, everyone, I'm a new member to this group as of 4/21/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Yes, I did already have it done a year ago. I was one of the very lucky ones who, with the help of Clomid(a fertility drug) got PG 3 months after my TR. Our baby is almost 2 months old. new member Hello, everyone, I'm a new member to this group as of 4/21/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2003 Report Share Posted April 22, 2003 Thank you. Have you had a TR or just considering it? new member Hello, everyone, I'm a new member to this group as of 4/21/03. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2003 Report Share Posted May 18, 2003 Hi Teejay---My name is Cindi and I just had my TR with Dr. Levin in March. Really the doctor must be able to read minds because he answered all my questions before I could even ask them. He takes his time and is very nice. Not in a hurry at all. Don't worry. I went to him without any TL reports at all so I was really a basket case. Good luck. babyjinks3 wrote:hi my name is teejay, i am doing my phone consultation next week hopefully with doctor levin, is their any advice on what the important thing are to ask? im trying to write down all my questions before he calls and i know ill forget to ask some important ones....any advice would be most helpful, thank you....teejay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 Teejay, welcome to the group. Krissy > hi my name is teejay, i am doing my phone consultation next week > hopefully with doctor levin, is their any advice on what the important > thing are to ask? im trying to write down all my questions before he > calls and i know ill forget to ask some important ones....any advice > would be most helpful, thank you....teejay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 I am forwarding this post to all members of the group. After reading what had to say, I am positive we have a lovely new member of our group. It is times like this that I am so very thankful for the Internet. lives on the other side of the world and yet we are all able to communicate with her, offer her our support while getting support from her. Welcome . It is wonderful to have you as a member. If you want to respond to the entire group, just reply to this E-mail and we will all, owners, moderators and group members receive it. I am really looking forward to getting to know you. Hugs - a B. RE: Welcome to LUPIES Hi, My name is Cheung, 48 years old and I have never expected so much response from the group, so many of you are out there.I have been living in many countries, I was borned in Hong Kong and first diagnosed with Lupus when I was 22Years old a college student in Leeds, England. It took some time and changed a few doctors to get the final diagnosis. Luckyly I had a very caring husband helping me go through all the difficult time. We live in Leeds for 14 years and Janet, My daughter was borned there. She is going to be 24 years old tomorrow.From England we moved to Shanghai, China. In 1989 the life there is a bit hard special for my daughter even she was in an Americain International school. We were transfered to Jakarta, Indonesia in 1992, I was working for a German company in Jakarta and force to quit the job because of my health. I had severe plain at my hip and won't able to walk and after that another problem came up I had an operation because of suspected turmor in the oval, thanks god it was not the bad one.We stayed in Jakarta for ten years and now transfered back to Shanghai. But the life in here now is a lot better than the old day. My problem is bad circulation and always had rushes on my sclap and back of the ears and it come and go. My big problem now is my left eye sight getting worst and worst. I have seen many doctors here and also in Hong kong but they give me different diagnosis and advise so I am on the cross road now and don't know where to turn and who to listen. I have broken the bone of my left foot two months ago because I missed one step when I walked down the stairs in my new house. I was put on casing for six weeks and walked with a stick and wheel chair. I can walk more freely now because the casing is off but the bone is not competely heal yet.Although I had so much problem but I always try to do something I like and spent time with friends. It will help me to forget I am a sick person and I never think of my age too.I think I have talked enough for today and you should know who is by now. Anyway, I forget to tell you I also had a cat called Bruce, someone left him on the road, so little not even open his eyes yet and the maid in the office pick him up and ask my husband to keep him, although he know I scare of cat all my life but because he love animal and want to save him he beg me to look after him. I can't refuse when I saw the poor little kitten and now the first thing I get home is call' Bruce ' and hud him.Best Regards,P.S. Can you forward my message to all the Moderator because I received different e-mail from them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 I am forwarding this post to all members of the group. After reading what had to say, I am positive we have a lovely new member of our group. It is times like this that I am so very thankful for the Internet. lives on the other side of the world and yet we are all able to communicate with her, offer her our support while getting support from her. Welcome . It is wonderful to have you as a member. If you want to respond to the entire group, just reply to this E-mail and we will all, owners, moderators and group members receive it. I am really looking forward to getting to know you. Hugs - a B. RE: Welcome to LUPIES Hi, My name is Cheung, 48 years old and I have never expected so much response from the group, so many of you are out there.I have been living in many countries, I was borned in Hong Kong and first diagnosed with Lupus when I was 22Years old a college student in Leeds, England. It took some time and changed a few doctors to get the final diagnosis. Luckyly I had a very caring husband helping me go through all the difficult time. We live in Leeds for 14 years and Janet, My daughter was borned there. She is going to be 24 years old tomorrow.From England we moved to Shanghai, China. In 1989 the life there is a bit hard special for my daughter even she was in an Americain International school. We were transfered to Jakarta, Indonesia in 1992, I was working for a German company in Jakarta and force to quit the job because of my health. I had severe plain at my hip and won't able to walk and after that another problem came up I had an operation because of suspected turmor in the oval, thanks god it was not the bad one.We stayed in Jakarta for ten years and now transfered back to Shanghai. But the life in here now is a lot better than the old day. My problem is bad circulation and always had rushes on my sclap and back of the ears and it come and go. My big problem now is my left eye sight getting worst and worst. I have seen many doctors here and also in Hong kong but they give me different diagnosis and advise so I am on the cross road now and don't know where to turn and who to listen. I have broken the bone of my left foot two months ago because I missed one step when I walked down the stairs in my new house. I was put on casing for six weeks and walked with a stick and wheel chair. I can walk more freely now because the casing is off but the bone is not competely heal yet.Although I had so much problem but I always try to do something I like and spent time with friends. It will help me to forget I am a sick person and I never think of my age too.I think I have talked enough for today and you should know who is by now. Anyway, I forget to tell you I also had a cat called Bruce, someone left him on the road, so little not even open his eyes yet and the maid in the office pick him up and ask my husband to keep him, although he know I scare of cat all my life but because he love animal and want to save him he beg me to look after him. I can't refuse when I saw the poor little kitten and now the first thing I get home is call' Bruce ' and hud him.Best Regards,P.S. Can you forward my message to all the Moderator because I received different e-mail from them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 I am forwarding this post to all members of the group. After reading what had to say, I am positive we have a lovely new member of our group. It is times like this that I am so very thankful for the Internet. lives on the other side of the world and yet we are all able to communicate with her, offer her our support while getting support from her. Welcome . It is wonderful to have you as a member. If you want to respond to the entire group, just reply to this E-mail and we will all, owners, moderators and group members receive it. I am really looking forward to getting to know you. Hugs - a B. RE: Welcome to LUPIES Hi, My name is Cheung, 48 years old and I have never expected so much response from the group, so many of you are out there.I have been living in many countries, I was borned in Hong Kong and first diagnosed with Lupus when I was 22Years old a college student in Leeds, England. It took some time and changed a few doctors to get the final diagnosis. Luckyly I had a very caring husband helping me go through all the difficult time. We live in Leeds for 14 years and Janet, My daughter was borned there. She is going to be 24 years old tomorrow.From England we moved to Shanghai, China. In 1989 the life there is a bit hard special for my daughter even she was in an Americain International school. We were transfered to Jakarta, Indonesia in 1992, I was working for a German company in Jakarta and force to quit the job because of my health. I had severe plain at my hip and won't able to walk and after that another problem came up I had an operation because of suspected turmor in the oval, thanks god it was not the bad one.We stayed in Jakarta for ten years and now transfered back to Shanghai. But the life in here now is a lot better than the old day. My problem is bad circulation and always had rushes on my sclap and back of the ears and it come and go. My big problem now is my left eye sight getting worst and worst. I have seen many doctors here and also in Hong kong but they give me different diagnosis and advise so I am on the cross road now and don't know where to turn and who to listen. I have broken the bone of my left foot two months ago because I missed one step when I walked down the stairs in my new house. I was put on casing for six weeks and walked with a stick and wheel chair. I can walk more freely now because the casing is off but the bone is not competely heal yet.Although I had so much problem but I always try to do something I like and spent time with friends. It will help me to forget I am a sick person and I never think of my age too.I think I have talked enough for today and you should know who is by now. Anyway, I forget to tell you I also had a cat called Bruce, someone left him on the road, so little not even open his eyes yet and the maid in the office pick him up and ask my husband to keep him, although he know I scare of cat all my life but because he love animal and want to save him he beg me to look after him. I can't refuse when I saw the poor little kitten and now the first thing I get home is call' Bruce ' and hud him.Best Regards,P.S. Can you forward my message to all the Moderator because I received different e-mail from them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Hi Billi.......Welcome to the group! You've found the right group for all your concerns. This is a wonderfully, supportive, smart,and humorous group of friends to have. My name is C, aka` Lonewolf'.....I'm 60 yrs old, and live alone with a cantankerous computer named `Lamar'. .....I have 4 grown kids , 5 grandchildren,and 2 great grandchildren. If it weren't for my Lupie friends I would be completely isolated. This group has literally saved my life. drlnclemntyn69 wrote: Hello, My name is Billi. I am a 35 yo mom of 4 great kids. As I am starting to have some new medical concerns I am joining these wonderful groups for alot of reasons.... # 1- I am alone WAY too much and this gives me compassionate people to talk to that understand and actually want to listen. # 2- I believe that knowledge is power and I need all that I can get. #-3 It gives me piece of mind to know that there may be things I can do about my health and I'll know whats going on in my body. and finally.... # 4- it lets me know that i'm not alone. any hoo I look foreward to getting to know all of you.."The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Hi Billi.......Welcome to the group! You've found the right group for all your concerns. This is a wonderfully, supportive, smart,and humorous group of friends to have. My name is C, aka` Lonewolf'.....I'm 60 yrs old, and live alone with a cantankerous computer named `Lamar'. .....I have 4 grown kids , 5 grandchildren,and 2 great grandchildren. If it weren't for my Lupie friends I would be completely isolated. This group has literally saved my life. drlnclemntyn69 wrote: Hello, My name is Billi. I am a 35 yo mom of 4 great kids. As I am starting to have some new medical concerns I am joining these wonderful groups for alot of reasons.... # 1- I am alone WAY too much and this gives me compassionate people to talk to that understand and actually want to listen. # 2- I believe that knowledge is power and I need all that I can get. #-3 It gives me piece of mind to know that there may be things I can do about my health and I'll know whats going on in my body. and finally.... # 4- it lets me know that i'm not alone. any hoo I look foreward to getting to know all of you.."The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Hi Billi.......Welcome to the group! You've found the right group for all your concerns. This is a wonderfully, supportive, smart,and humorous group of friends to have. My name is C, aka` Lonewolf'.....I'm 60 yrs old, and live alone with a cantankerous computer named `Lamar'. .....I have 4 grown kids , 5 grandchildren,and 2 great grandchildren. If it weren't for my Lupie friends I would be completely isolated. This group has literally saved my life. drlnclemntyn69 wrote: Hello, My name is Billi. I am a 35 yo mom of 4 great kids. As I am starting to have some new medical concerns I am joining these wonderful groups for alot of reasons.... # 1- I am alone WAY too much and this gives me compassionate people to talk to that understand and actually want to listen. # 2- I believe that knowledge is power and I need all that I can get. #-3 It gives me piece of mind to know that there may be things I can do about my health and I'll know whats going on in my body. and finally.... # 4- it lets me know that i'm not alone. any hoo I look foreward to getting to know all of you.."The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/gallery/view?username=lupies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi Rita, Just read your message and although I am fairly new to this also, just wanted to say hello. I am your namesake, another Rita but on the other side of you, in Gainesville, Florida. I also have a son with both PSC and UC. My son just started his sophomore year in college and turned 19 in June. He was diagnosed a year ago in June of 2005 after nearly a year with diarrhoea. His senior year in high school was miserable because of the diarrhea. He didn't always tell us about it but he dropped out of the soccer team and he had played soccer in 9th (junior varsity) and then 10-11 on varsity teams. At the time he sited other reasons for quiting , little did we know. The family doctor did not even think to check his liver enzymes and it was only after insisting to be refered to a GI and liver panel tests were run that everything became clear and changed everyones life. recently we were told that he may have an overlap of the PSC with autoimmune hepatitis. Yesterday we say another GI, not his regular one and this one was doubtful that he has the autoimmune hepatitis. Anyway they all say he has PSC and UC though. He is doing well at the moment. The school year just started and now he is playing quite a bit of rugby and soccer. He is currently on azathioprine, ursadiol and asacol. I also let him take fish oil, calcium, folic acid and multivite. I know he doesn't take the supplements as regularly as his prescriptions though. There are many people here who have a lot of information and are always willing to give out information. This site has helped me a lot in questions to ask, what supplements to take, etc and I hope you find some information. It helps sometimes to search for a topic by requesting for information under " search " when you get to this site and you will be able to pull up a lot of responses from members. I hope your son soon finds what works for him because at their ages, there is so much going on that any extra stress is not healthy. Always make a list to ask a lot of questions when you see his doctor and make sure you are comfortable with his doctor because it is a long haul. Take care of yourself also. Rita (from Florida) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi Rita, Just read your message and although I am fairly new to this also, just wanted to say hello. I am your namesake, another Rita but on the other side of you, in Gainesville, Florida. I also have a son with both PSC and UC. My son just started his sophomore year in college and turned 19 in June. He was diagnosed a year ago in June of 2005 after nearly a year with diarrhoea. His senior year in high school was miserable because of the diarrhea. He didn't always tell us about it but he dropped out of the soccer team and he had played soccer in 9th (junior varsity) and then 10-11 on varsity teams. At the time he sited other reasons for quiting , little did we know. The family doctor did not even think to check his liver enzymes and it was only after insisting to be refered to a GI and liver panel tests were run that everything became clear and changed everyones life. recently we were told that he may have an overlap of the PSC with autoimmune hepatitis. Yesterday we say another GI, not his regular one and this one was doubtful that he has the autoimmune hepatitis. Anyway they all say he has PSC and UC though. He is doing well at the moment. The school year just started and now he is playing quite a bit of rugby and soccer. He is currently on azathioprine, ursadiol and asacol. I also let him take fish oil, calcium, folic acid and multivite. I know he doesn't take the supplements as regularly as his prescriptions though. There are many people here who have a lot of information and are always willing to give out information. This site has helped me a lot in questions to ask, what supplements to take, etc and I hope you find some information. It helps sometimes to search for a topic by requesting for information under " search " when you get to this site and you will be able to pull up a lot of responses from members. I hope your son soon finds what works for him because at their ages, there is so much going on that any extra stress is not healthy. Always make a list to ask a lot of questions when you see his doctor and make sure you are comfortable with his doctor because it is a long haul. Take care of yourself also. Rita (from Florida) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hi Rita, My son attends the University of Florida in gainesville and currently commutes from home. He has been threatening to move though. Actually he wanted to move his sophomore year but his friend he was going to share a place with changed his mind and decided to commute from home this year.He now wants to move out in the spring or next fall. I was glad that he is at home still because he is and has always been a lousy eater and if at home, I at least can make sure that at least he has a good meal in the evening. He takes his presciption medicines but I can see that he is actually not taking his multivite and other supplements . We had to ask the doctor if he could change his asacol from 2 tabs three times a day to three tabs twice a day since he kept on missing the afternoon dose. When he had the liver biosy last year, they said there was some fibriosis. His MRCP showed some beading of the intra and extra hepatic bile ducts but no cirrhosis. His labs are OK at the moment. He just had labs done on Wednesday and so we have yet to get the results of those. His weight and height has stayed the same for quite some time now, actually even before he was diagnosed but from what I read, may be a factor of the PSC. He gets quite depressed about not growing sometimes but at least I am glad that his weight is not going down. He is OK, no pain or anything now. And I think I do enough worrying for the whole family. How is it affecting your son's schooling? This disease can be a bummer. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hi Rita, My son attends the University of Florida in gainesville and currently commutes from home. He has been threatening to move though. Actually he wanted to move his sophomore year but his friend he was going to share a place with changed his mind and decided to commute from home this year.He now wants to move out in the spring or next fall. I was glad that he is at home still because he is and has always been a lousy eater and if at home, I at least can make sure that at least he has a good meal in the evening. He takes his presciption medicines but I can see that he is actually not taking his multivite and other supplements . We had to ask the doctor if he could change his asacol from 2 tabs three times a day to three tabs twice a day since he kept on missing the afternoon dose. When he had the liver biosy last year, they said there was some fibriosis. His MRCP showed some beading of the intra and extra hepatic bile ducts but no cirrhosis. His labs are OK at the moment. He just had labs done on Wednesday and so we have yet to get the results of those. His weight and height has stayed the same for quite some time now, actually even before he was diagnosed but from what I read, may be a factor of the PSC. He gets quite depressed about not growing sometimes but at least I am glad that his weight is not going down. He is OK, no pain or anything now. And I think I do enough worrying for the whole family. How is it affecting your son's schooling? This disease can be a bummer. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hi Rita, My son attends the University of Florida in gainesville and currently commutes from home. He has been threatening to move though. Actually he wanted to move his sophomore year but his friend he was going to share a place with changed his mind and decided to commute from home this year.He now wants to move out in the spring or next fall. I was glad that he is at home still because he is and has always been a lousy eater and if at home, I at least can make sure that at least he has a good meal in the evening. He takes his presciption medicines but I can see that he is actually not taking his multivite and other supplements . We had to ask the doctor if he could change his asacol from 2 tabs three times a day to three tabs twice a day since he kept on missing the afternoon dose. When he had the liver biosy last year, they said there was some fibriosis. His MRCP showed some beading of the intra and extra hepatic bile ducts but no cirrhosis. His labs are OK at the moment. He just had labs done on Wednesday and so we have yet to get the results of those. His weight and height has stayed the same for quite some time now, actually even before he was diagnosed but from what I read, may be a factor of the PSC. He gets quite depressed about not growing sometimes but at least I am glad that his weight is not going down. He is OK, no pain or anything now. And I think I do enough worrying for the whole family. How is it affecting your son's schooling? This disease can be a bummer. Rita Quote Link to comment Share on other sites More sharing options...
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