Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 Hi, I'm 46 yr. old female. I also play the piano but because the fingers have never worked very well, I've never been able to play like I would have liked. Also my hands are very small, very boney, thin. So it's always been impossible to reach an octave. My knees hurt also, worse when I'm on my feet too long. Sometimes my feet will feel numb, almost dead, like you described. Has anyone ever had their big toe stand at attention. That's the best way to describe it. I have to laugh when it does that. I have to manually put it back down. It only happens if I overdo it and am on my feet too long. It's always on the same foot. Also would like to know if anyone else has extremely small hands like I described. I know Becky does, she told me earlier. I also talk to another member that has small hands. My feet are also small, my daughter [26] wears a 1 1/2 in childrens shoes. Talk about hard to find shoes for a grown woman. Athletic shoes can be found but she is able to still wear slip on shoes, which I never could, and everything looks like shoes that a 5 year old should wear. We have always laughed about that. She has a fantastic sense of humor. Well, some of us wondered if it had anything to do with having Roussy- Levy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 Hi, I'm 46 yr. old female. I also play the piano but because the fingers have never worked very well, I've never been able to play like I would have liked. Also my hands are very small, very boney, thin. So it's always been impossible to reach an octave. My knees hurt also, worse when I'm on my feet too long. Sometimes my feet will feel numb, almost dead, like you described. Has anyone ever had their big toe stand at attention. That's the best way to describe it. I have to laugh when it does that. I have to manually put it back down. It only happens if I overdo it and am on my feet too long. It's always on the same foot. Also would like to know if anyone else has extremely small hands like I described. I know Becky does, she told me earlier. I also talk to another member that has small hands. My feet are also small, my daughter [26] wears a 1 1/2 in childrens shoes. Talk about hard to find shoes for a grown woman. Athletic shoes can be found but she is able to still wear slip on shoes, which I never could, and everything looks like shoes that a 5 year old should wear. We have always laughed about that. She has a fantastic sense of humor. Well, some of us wondered if it had anything to do with having Roussy- Levy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 Hi, cmontana ... See my latest post on weight training and exercise. As far as shoes go ... makes some good shoes with extra wide toe ends. I wear them exclusively, even for business attire. They are made in England, top quality and expensive. You can find them at better shoe stores in most large malls. At home, my uniform is tee shirts, shorts and sandals. I have the same feelings in my feet as you do ... cramps, aching, needle pricks ... etc. My feet feel dead from the balls of my feet to the tips of my toes. Dead, unless they are wracked with pain. Most of my severe pain comes from the cramping and the only thing that seems to really work (don't faint now) is to smoke a little pot. I only do this in the evening when the day is over and I don't have to work or drive. After about 10-15 minutes from the time I take my first puff, the cramping goes completely away and that takes the pain away. I still get the electric shock type of pain after smoking ... but It just doesn't seem to bother me as much. Here in California, we passed Proposition 215 which allows the use of marijuana for medicinal purposes ... you can even grow a little for personal use. You have to be careful though ... the power structure is not giving up their control on prohibition easily. I have talked with plenty of others who use this herb for medicine and it does wonders for a whole plethora of conditions. I would like to hear from any other CMTers who indulge in the Devil Weed for relief ... Ella says: Cool Man ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 Hi, cmontana ... See my latest post on weight training and exercise. As far as shoes go ... makes some good shoes with extra wide toe ends. I wear them exclusively, even for business attire. They are made in England, top quality and expensive. You can find them at better shoe stores in most large malls. At home, my uniform is tee shirts, shorts and sandals. I have the same feelings in my feet as you do ... cramps, aching, needle pricks ... etc. My feet feel dead from the balls of my feet to the tips of my toes. Dead, unless they are wracked with pain. Most of my severe pain comes from the cramping and the only thing that seems to really work (don't faint now) is to smoke a little pot. I only do this in the evening when the day is over and I don't have to work or drive. After about 10-15 minutes from the time I take my first puff, the cramping goes completely away and that takes the pain away. I still get the electric shock type of pain after smoking ... but It just doesn't seem to bother me as much. Here in California, we passed Proposition 215 which allows the use of marijuana for medicinal purposes ... you can even grow a little for personal use. You have to be careful though ... the power structure is not giving up their control on prohibition easily. I have talked with plenty of others who use this herb for medicine and it does wonders for a whole plethora of conditions. I would like to hear from any other CMTers who indulge in the Devil Weed for relief ... Ella says: Cool Man ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 << My knees hurt also, worse when I'm on my feet too long. >> << It only happens if I overdo it and am on my feet too long. It's always on the same foot. >> Do you see a pattern here???? Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 << My knees hurt also, worse when I'm on my feet too long. >> << It only happens if I overdo it and am on my feet too long. It's always on the same foot. >> Do you see a pattern here???? Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 Hi, ... I spent the night at a friends house last night. When I awoke this morning, my feet were killing me, and wouldn't you know it ... I was out of pain medication. My friend is recovering from broken ribs acquired in a skiing accident and she let me have one of her Vicodin tablets. Here we go again ... I was pretty wiped out for the entire day on just one tablet. I should have broken it in half and only taken one piece. I don't think I could take a steady diet of Vicodin and still function at work. It really helped with the pain, though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 7/16/2000 11:08:38 PM Pacific Daylight Time, oregonpapa@... writes: << Hi, ... I spent the night at a friends house last night. When I awoke this morning, my feet were killing me, and wouldn't you know it ... I was out of pain medication. My friend is recovering from broken ribs acquired in a skiing accident and she let me have one of her Vicodin tablets. Here we go again .... I was pretty wiped out for the entire day on just one tablet. I should have broken it in half and only taken one piece. I don't think I could take a steady diet of Vicodin and still function at work. It really helped with the pain, though. >> I have to take a 1/2 of everything. I am a light weight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 In a message dated 7/16/2000 11:08:38 PM Pacific Daylight Time, oregonpapa@... writes: << Hi, ... I spent the night at a friends house last night. When I awoke this morning, my feet were killing me, and wouldn't you know it ... I was out of pain medication. My friend is recovering from broken ribs acquired in a skiing accident and she let me have one of her Vicodin tablets. Here we go again .... I was pretty wiped out for the entire day on just one tablet. I should have broken it in half and only taken one piece. I don't think I could take a steady diet of Vicodin and still function at work. It really helped with the pain, though. >> I have to take a 1/2 of everything. I am a light weight. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Your situation sounds allot like mine. I had a real cool AFO it was leather that went half way up my calf.I also have drop foot on right the nuero. said my right leg was worse than my left I have terrible knee pain I just got orthotices & they really helped the 1st few days I wore them my whole body ached they said it was because I was finally walking straight now I can't go without them...I do water exercises because we have a pool but don't last long the neuro. said we need to try to maintain the muscle we have because we can't get back what we've lost.But from what I've learned you really have to be careful & not overdue it or you destroy what you have.Its kind of a catch 22 from about an inch or 2 above my knee is pain. I also get dry mouth from neautrin by Dr. said it was important for me to drink allot of water so this kinda helps.. ;) > > t. > > > m. > > > . > > W > > > . > > o > ---------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Your situation sounds allot like mine. I had a real cool AFO it was leather that went half way up my calf.I also have drop foot on right the nuero. said my right leg was worse than my left I have terrible knee pain I just got orthotices & they really helped the 1st few days I wore them my whole body ached they said it was because I was finally walking straight now I can't go without them...I do water exercises because we have a pool but don't last long the neuro. said we need to try to maintain the muscle we have because we can't get back what we've lost.But from what I've learned you really have to be careful & not overdue it or you destroy what you have.Its kind of a catch 22 from about an inch or 2 above my knee is pain. I also get dry mouth from neautrin by Dr. said it was important for me to drink allot of water so this kinda helps.. ;) > > t. > > > m. > > > . > > W > > > . > > o > ---------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2000 Report Share Posted July 17, 2000 Your situation sounds allot like mine. I had a real cool AFO it was leather that went half way up my calf.I also have drop foot on right the nuero. said my right leg was worse than my left I have terrible knee pain I just got orthotices & they really helped the 1st few days I wore them my whole body ached they said it was because I was finally walking straight now I can't go without them...I do water exercises because we have a pool but don't last long the neuro. said we need to try to maintain the muscle we have because we can't get back what we've lost.But from what I've learned you really have to be careful & not overdue it or you destroy what you have.Its kind of a catch 22 from about an inch or 2 above my knee is pain. I also get dry mouth from neautrin by Dr. said it was important for me to drink allot of water so this kinda helps.. ;) > > t. > > > m. > > > . > > W > > > . > > o > ---------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 Hi, . Thanks for the reply. Yes, we do need to be careful. Yesterday I overdid a lot and today I'm really paying for it. Went to the grocery store after work, didn't wear the knee brace and I was a basket case by the time I got home. Also carried the stuff in from the car - too much at one time. Today my wrists have ached all day. In fact I kind of ache all over, but know it's not the flu, it's just overdo! Hopefully tomorrow will be better. Someday I will, hopefully, remember what it's like before I go so far. Re: Intro and questions Your situation sounds allot like mine. I had a real cool AFO it was leather that went half way up my calf.I also have drop foot on right the nuero. said my right leg was worse than my left I have terrible knee pain I just got orthotices & they really helped the 1st few days I wore them my whole body ached they said it was because I was finally walking straight now I can't go without them...I do water exercises because we have a pool but don't last long the neuro. said we need to try to maintain the muscle we have because we can't get back what we've lost.But from what I've learned you really have to be careful & not overdue it or you destroy what you have.Its kind of a catch 22 from about an inch or 2 above my knee is pain. I also get dry mouth from neautrin by Dr. said it was important for me to drink allot of water so this kinda helps.. ;) > > t. > > > m. > > > . > > W > > > . > > o > ---------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2000 Report Share Posted July 18, 2000 Hi, . Thanks for the reply. Yes, we do need to be careful. Yesterday I overdid a lot and today I'm really paying for it. Went to the grocery store after work, didn't wear the knee brace and I was a basket case by the time I got home. Also carried the stuff in from the car - too much at one time. Today my wrists have ached all day. In fact I kind of ache all over, but know it's not the flu, it's just overdo! Hopefully tomorrow will be better. Someday I will, hopefully, remember what it's like before I go so far. Re: Intro and questions Your situation sounds allot like mine. I had a real cool AFO it was leather that went half way up my calf.I also have drop foot on right the nuero. said my right leg was worse than my left I have terrible knee pain I just got orthotices & they really helped the 1st few days I wore them my whole body ached they said it was because I was finally walking straight now I can't go without them...I do water exercises because we have a pool but don't last long the neuro. said we need to try to maintain the muscle we have because we can't get back what we've lost.But from what I've learned you really have to be careful & not overdue it or you destroy what you have.Its kind of a catch 22 from about an inch or 2 above my knee is pain. I also get dry mouth from neautrin by Dr. said it was important for me to drink allot of water so this kinda helps.. ;) > > t. > > > m. > > > . > > W > > > . > > o > ---------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi ,  And welcome, we are very sorry about your sons diagnosis (fuzzy diagnosis), either way it sounds like your son is well on his way to needing a liver transplant. There are lots of moms that are members, several with young children with PSC. I see that you are on facebook as well, so I will send you a photo list of some of the PSC MOMS.  Ian (52) PSC 89 Hello all, My name is , and this last Nov. we discovered that my 8yr old son Nick had low enough white blood and platelet counts that we immediatly were sent to University of MO. Columbia for a ton of labs, CT w/ contrast, and a bone marrow test. His spleen was enlarged 4cm past his ribcage, and his liver was also enlarged. He also had portal hypertension.  We had one initial visit to the pediatric liver specialist through MU two weeks later and his spleen was enlarged 8cm and to the midline of his chest. He was put on vitim K until a liver biopsy and an upper and lower GI could be done on him. This was around Xmas and after a month of waiting I still wasn't even on the books for an appointment.  I contacted Children's Mercy Hospital in KC, and four days later we were there having MRI, Upper and lower GI, liver biopsy, and sweat chloride test. I might have even left some things out. Nick received platelets while he was there. After a week in the hospital we were told his liver showed signs of scaring. Dr. was really leaning towards PSC. He was put on Ursodiol twice day, and omeprezole (anacid).  A few weeks later we were back having an ERCP done. After a bad bout of pancreatis the Doc then tells us that he has severe liver disease, but they don't know which one it is. He said it was not PSC. It was somewhere on the spectrum between PSC and Auto immune. What does that mean? Is that what it means when I have read other posts from people have over (lapping) PSC and Auto immune?  Anyway, Doctor says Nick's small bile ducts are scared and a lot of them are gone. He is calling what Nick has secondary liver fibrosis with portal hypertension. They told us his spleen will not go back down to size either. He also has some small veracies in his stomach.  They say they will just have to track his symptoms and changes over the next several months to a year to figure out what disease it is. No mention of staging yet. Just that he has significant scaring of the small bile ducts. His last visit was Mar. 6 th and they said his plateletts have been running between 47-57 the whole time. I have a print off that says his alt was 53units, his ast was 50 units,his bilirubin is 0.5mg/dl what ever that means. Not sure if that is high or what. He doesn't look jaundice. They told us he can wait an come back in June unless there are changes. A few times he has had small amounts of blood in his stools, but that has only been one stool per incident. Doc said not to worry unless it happens more than once or is a lot. Then I need to check his levels again.  Just wanted to say I have lurked here since Dec. and have learned a lot. Not sure if I belong here or not, really. Please let me know any info you have or whatever about my son's issues. I have done some reading that says that portal hypertension and enlarged spleen are signs that the disease is in later stages. I don't know why I haven't ask my doc. I prob just was too scared to. Any ideas?  Sorry for my long novel. I'll keep it shorter from here out. Thanks so much for your posts and responses. I have learned a lot by reading them. son Nick newly 9yrs. w/ liver disease 2/09 -- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi ,  And welcome, we are very sorry about your sons diagnosis (fuzzy diagnosis), either way it sounds like your son is well on his way to needing a liver transplant. There are lots of moms that are members, several with young children with PSC. I see that you are on facebook as well, so I will send you a photo list of some of the PSC MOMS.  Ian (52) PSC 89 Hello all, My name is , and this last Nov. we discovered that my 8yr old son Nick had low enough white blood and platelet counts that we immediatly were sent to University of MO. Columbia for a ton of labs, CT w/ contrast, and a bone marrow test. His spleen was enlarged 4cm past his ribcage, and his liver was also enlarged. He also had portal hypertension.  We had one initial visit to the pediatric liver specialist through MU two weeks later and his spleen was enlarged 8cm and to the midline of his chest. He was put on vitim K until a liver biopsy and an upper and lower GI could be done on him. This was around Xmas and after a month of waiting I still wasn't even on the books for an appointment.  I contacted Children's Mercy Hospital in KC, and four days later we were there having MRI, Upper and lower GI, liver biopsy, and sweat chloride test. I might have even left some things out. Nick received platelets while he was there. After a week in the hospital we were told his liver showed signs of scaring. Dr. was really leaning towards PSC. He was put on Ursodiol twice day, and omeprezole (anacid).  A few weeks later we were back having an ERCP done. After a bad bout of pancreatis the Doc then tells us that he has severe liver disease, but they don't know which one it is. He said it was not PSC. It was somewhere on the spectrum between PSC and Auto immune. What does that mean? Is that what it means when I have read other posts from people have over (lapping) PSC and Auto immune?  Anyway, Doctor says Nick's small bile ducts are scared and a lot of them are gone. He is calling what Nick has secondary liver fibrosis with portal hypertension. They told us his spleen will not go back down to size either. He also has some small veracies in his stomach.  They say they will just have to track his symptoms and changes over the next several months to a year to figure out what disease it is. No mention of staging yet. Just that he has significant scaring of the small bile ducts. His last visit was Mar. 6 th and they said his plateletts have been running between 47-57 the whole time. I have a print off that says his alt was 53units, his ast was 50 units,his bilirubin is 0.5mg/dl what ever that means. Not sure if that is high or what. He doesn't look jaundice. They told us he can wait an come back in June unless there are changes. A few times he has had small amounts of blood in his stools, but that has only been one stool per incident. Doc said not to worry unless it happens more than once or is a lot. Then I need to check his levels again.  Just wanted to say I have lurked here since Dec. and have learned a lot. Not sure if I belong here or not, really. Please let me know any info you have or whatever about my son's issues. I have done some reading that says that portal hypertension and enlarged spleen are signs that the disease is in later stages. I don't know why I haven't ask my doc. I prob just was too scared to. Any ideas?  Sorry for my long novel. I'll keep it shorter from here out. Thanks so much for your posts and responses. I have learned a lot by reading them. son Nick newly 9yrs. w/ liver disease 2/09 -- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi ,  And welcome, we are very sorry about your sons diagnosis (fuzzy diagnosis), either way it sounds like your son is well on his way to needing a liver transplant. There are lots of moms that are members, several with young children with PSC. I see that you are on facebook as well, so I will send you a photo list of some of the PSC MOMS.  Ian (52) PSC 89 Hello all, My name is , and this last Nov. we discovered that my 8yr old son Nick had low enough white blood and platelet counts that we immediatly were sent to University of MO. Columbia for a ton of labs, CT w/ contrast, and a bone marrow test. His spleen was enlarged 4cm past his ribcage, and his liver was also enlarged. He also had portal hypertension.  We had one initial visit to the pediatric liver specialist through MU two weeks later and his spleen was enlarged 8cm and to the midline of his chest. He was put on vitim K until a liver biopsy and an upper and lower GI could be done on him. This was around Xmas and after a month of waiting I still wasn't even on the books for an appointment.  I contacted Children's Mercy Hospital in KC, and four days later we were there having MRI, Upper and lower GI, liver biopsy, and sweat chloride test. I might have even left some things out. Nick received platelets while he was there. After a week in the hospital we were told his liver showed signs of scaring. Dr. was really leaning towards PSC. He was put on Ursodiol twice day, and omeprezole (anacid).  A few weeks later we were back having an ERCP done. After a bad bout of pancreatis the Doc then tells us that he has severe liver disease, but they don't know which one it is. He said it was not PSC. It was somewhere on the spectrum between PSC and Auto immune. What does that mean? Is that what it means when I have read other posts from people have over (lapping) PSC and Auto immune?  Anyway, Doctor says Nick's small bile ducts are scared and a lot of them are gone. He is calling what Nick has secondary liver fibrosis with portal hypertension. They told us his spleen will not go back down to size either. He also has some small veracies in his stomach.  They say they will just have to track his symptoms and changes over the next several months to a year to figure out what disease it is. No mention of staging yet. Just that he has significant scaring of the small bile ducts. His last visit was Mar. 6 th and they said his plateletts have been running between 47-57 the whole time. I have a print off that says his alt was 53units, his ast was 50 units,his bilirubin is 0.5mg/dl what ever that means. Not sure if that is high or what. He doesn't look jaundice. They told us he can wait an come back in June unless there are changes. A few times he has had small amounts of blood in his stools, but that has only been one stool per incident. Doc said not to worry unless it happens more than once or is a lot. Then I need to check his levels again.  Just wanted to say I have lurked here since Dec. and have learned a lot. Not sure if I belong here or not, really. Please let me know any info you have or whatever about my son's issues. I have done some reading that says that portal hypertension and enlarged spleen are signs that the disease is in later stages. I don't know why I haven't ask my doc. I prob just was too scared to. Any ideas?  Sorry for my long novel. I'll keep it shorter from here out. Thanks so much for your posts and responses. I have learned a lot by reading them. son Nick newly 9yrs. w/ liver disease 2/09 -- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 , Hi! I hope you and your son are both having extremely good days! I'm not sure I can offer you any advice, but I can provide a sympathetic ear if you need one. You say you're not sure if you belong here. If you need our help and/or we can answer questions for you or give you peace of mind, you are more than welcome to be here and you absolutely do belong. That's one of the things I love so much about this site, not only is there an amazing array of knowledge and experience in this group, but I honestly think it's made up of some of the nicest, most compassionate and most caring people I've ever had the privilege of talking to. I am curious. You mention taking your son to several doctors. Were any of them specialists in PSC? PSC can be incredibly tricky to diagnose from my experience and from what I understand of it. Is there anyone nearby or anyone you can go to who might have some experience in that area who can give you some answers and some more peace of mind? Best of luck to you both! Sandi in VA/Rochester Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2009 Report Share Posted March 24, 2009 , Hi! I hope you and your son are both having extremely good days! I'm not sure I can offer you any advice, but I can provide a sympathetic ear if you need one. You say you're not sure if you belong here. If you need our help and/or we can answer questions for you or give you peace of mind, you are more than welcome to be here and you absolutely do belong. That's one of the things I love so much about this site, not only is there an amazing array of knowledge and experience in this group, but I honestly think it's made up of some of the nicest, most compassionate and most caring people I've ever had the privilege of talking to. I am curious. You mention taking your son to several doctors. Were any of them specialists in PSC? PSC can be incredibly tricky to diagnose from my experience and from what I understand of it. Is there anyone nearby or anyone you can go to who might have some experience in that area who can give you some answers and some more peace of mind? Best of luck to you both! Sandi in VA/Rochester Quote Link to comment Share on other sites More sharing options...
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