Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Hi and welcome to the group, Graves' disease causes many nutritient deficiencies. While you do want enough fruits, vegetables and grains you need adequate, but not excess, protein. It may be hard to get enough protein on a vegetarian diet. You can have small amounts of soy, but too much soy interferes with thyroid function. Anemia is more likely to be seen in hypothyroidism, but most everyone with GD has an initial period of hypothyroidism. This may be subtle and barely noticed or it may be overt, requiring medication for years. I have some nutrient info on my web site and so does at www.ithyroid.com Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/ Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 Hi B., Welcome to the board, and glad to hear you are feeling better already. When you were anemic, were you taking large doses of iron and they weren't helping? That is what happened to me. Turns out you can be anemic from lack of copper, Vitamin B, etc. not just iron. There is a bunch of nutritional information in the archives, and on www.ithyroid.com and on my website: http://www.webmosaics.com/thyroid/ There is also a letter for the newly diagnosed that has some good links and info (but it sounds like you have things under control): http://www.webmosaics.com/thyroid/letter/ Pam B. Diagnosed 12/01 (hyper with both graves and hashimotos ABs) Mostly Alt Med - doing MUCH better. Numbers very close to normal and ABs going away. My story: http://www.webmosaics.com/thyroid/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 " ziggystardust282003 " wrote: > > I have been a veg. for almost 10 yrs and I think that it might not be > the right thing for me. Vegan or vegetarian? It is a decision you have to make for yourself. Vegetarianism shouldn't have much effect on thyroid function or general health if you eat a balanced diet, I think a vegan diet is more troublesome because of particular deficiencies that occur unless you take specific actions to avoid them. We have at least one other regular vegetarian poster, if you're happy with your choice I'd stick with it and be proud -- many modern animal farming practices leave a lot to be desired. The secret to iron availablity is allegedly to eat your " greens " with a citrus fruit drink. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 > Hi and welcome to the group, > Graves' disease causes many nutritient deficiencies. While you do want enough > fruits, vegetables and grains you need adequate, but not excess, protein. It > may be hard to get enough protein on a vegetarian diet. You can have small > amounts of soy, but too much soy interferes with thyroid function. > > Anemia is more likely to be seen in hypothyroidism, but most everyone with GD > has an initial period of hypothyroidism. This may be subtle and barely > noticed or it may be overt, requiring medication for years. I have some > nutrient info on my web site and so does at www.ithyroid.com > Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/ > Take care, Elaine > > Thanks Elaine for your link to your website. You have a great deal of information on there. I had previously consumed a lot of soy ( wasn't it supposed to be good for you?) but have since been afraid to eat just about anything. I don't have much of an appetite at the moment which is the first time in my life at the holidays to not have an appetite.ha ha. I am reading up on it. Take care, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 > Hi and welcome to the group, > Graves' disease causes many nutritient deficiencies. While you do want enough > fruits, vegetables and grains you need adequate, but not excess, protein. It > may be hard to get enough protein on a vegetarian diet. You can have small > amounts of soy, but too much soy interferes with thyroid function. > > Anemia is more likely to be seen in hypothyroidism, but most everyone with GD > has an initial period of hypothyroidism. This may be subtle and barely > noticed or it may be overt, requiring medication for years. I have some > nutrient info on my web site and so does at www.ithyroid.com > Please visit my web site at http://daisyelaine_co.tripod.com/gravesdisease/ > Take care, Elaine > > Thanks Elaine for your link to your website. You have a great deal of information on there. I had previously consumed a lot of soy ( wasn't it supposed to be good for you?) but have since been afraid to eat just about anything. I don't have much of an appetite at the moment which is the first time in my life at the holidays to not have an appetite.ha ha. I am reading up on it. Take care, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2002 Report Share Posted December 31, 2002 Hi , Soy acts much like a goitrogen in that it competes with iodine in the gut. This can cause hypothyroidism if a great deal is consumed. But soy also interferes with the enzymes that are needed for proper thyroid function so it can contribute to thyroid function overall. While a small amount can be helpful in reducing hyper symptoms, goitrogens like raw broccoli, cabbage, etc. are more effective and don't have the potential to cause thyroid problems. Right now, keeping your iodine ingestion down by avoiding processed and pre-packaged foods will help you the most. Keep learning all you can relating to nutrition and GD. Best to you, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 Welcome to the group. I hope you get some answers to your questions. I am 62 and just went on disability. I have used a scooter or power wheelchair outside the home for about 12 years. Getting on the suppliments really helped me. laurie > > > > I have been recently diagnosed with mitochondrial myopathy. I am 40 > yrs old and have muscle weakness, respiratory muscle weakness. I am > trying to absorb all of this. My pulmo.md is very concerned and is > doing what he can to help. On my pft's , it showed obvious muscle > weakness. He suggests that at some point, I may have to go on > disablity. I am a RN and work in Labor and Delivery. I see a > cardiologist this week. Just am trying to find answers and any > suggestions and others that have mito. My muscle biopsy showed > increased lipid drops and currently more specialized tests are also > being done on the muscle tissue. Thanks! Lane > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2005 Report Share Posted March 19, 2005 I hope you can find some answers, and I have a question - do you have a doctor who knows about mitochondrial diseases? It seems that many of us have breakthroughs when we find either a " mito expert " or a doctor willing to learn enough about mito to suggest supplements or medications, or lifestyle changes. Sometimes it is difficult to find a doctor who will review the " mito cocktail " list of supplements and agree to help you try them out. , I am near your age, and am finishing school and looking for a new, full-time job. Many of us have had to adjust to how much we can do, and sometimes a few ideas can help us keep working as long as possible. Maybe you could make a list of things that are most difficult for you at your job, and try to develop some ideas for making things easier. Whether or not you get to the point where you take the list (or a few of the items) to your boss is up to you. At one point, I couldn't commute to work, so my husband had to drive me to work, which was quite out of his way. Take care, RH > > > > > > > > I have been recently diagnosed with mitochondrial myopathy. I am 40 > > yrs old and have muscle weakness, respiratory muscle weakness. I am > > trying to absorb all of this. My pulmo.md is very concerned and is > > doing what he can to help. On my pft's , it showed obvious muscle > > weakness. He suggests that at some point, I may have to go on > > disablity. I am a RN and work in Labor and Delivery. I see a > > cardiologist this week. Just am trying to find answers and any > > suggestions and others that have mito. My muscle biopsy showed > > increased lipid drops and currently more specialized tests are also > > being done on the muscle tissue. Thanks! Lane > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail > > is entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 Under the ADA (American's with Disability Act), employees have to put in writing (usually to human resources department) any adaptions that need to be made. When an employer knows your needs, even small things can make a difference. For me, I was able to work an additional 8-10 years because my assignment was in one location instead of traveling all over the county. laurie > > > I hope you can find some answers, and I have a question - do you have > a doctor who knows about mitochondrial diseases? It seems that many > of us have breakthroughs when we find either a " mito expert " or a > doctor willing to learn enough about mito to suggest supplements or > medications, or lifestyle changes. > > Sometimes it is difficult to find a doctor who will review the " mito > cocktail " list of supplements and agree to help you try them out. > > , I am near your age, and am finishing school and looking for a > new, full-time job. Many of us have had to adjust to how much we can > do, and sometimes a few ideas can help us keep working as long as > possible. Maybe you could make a list of things that are most > difficult for you at your job, and try to develop some ideas for > making things easier. Whether or not you get to the point where you > take the list (or a few of the items) to your boss is up to you. At > one point, I couldn't commute to work, so my husband had to drive me > to work, which was quite out of his way. > > Take care, > RH > > > > > > > > > > > > > > I have been recently diagnosed with mitochondrial myopathy. I am > 40 > > > yrs old and have muscle weakness, respiratory muscle weakness. I > am > > > trying to absorb all of this. My pulmo.md is very concerned and > is > > > doing what he can to help. On my pft's , it showed obvious muscle > > > weakness. He suggests that at some point, I may have to go on > > > disablity. I am a RN and work in Labor and Delivery. I see a > > > cardiologist this week. Just am trying to find answers and any > > > suggestions and others that have mito. My muscle biopsy showed > > > increased lipid drops and currently more specialized tests are > also > > > being done on the muscle tissue. Thanks! Lane > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements > contained herein > > > are not necessarily those of the list moderators. The author of > this e mail > > > is entirely responsible for its content. List members are > reminded of their > > > responsibility to evaluate the content of the postings and > consult with > > > their physicians regarding changes in their own treatment. > > > > > > Personal attacks are not permitted on the list and anyone who > sends one is > > > automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2005 Report Share Posted March 20, 2005 In a message dated 3/19/2005 6:33:37 PM Eastern Standard Time, lanebristow@... writes: On my pft's , it showed obvious muscle weakness. He suggests that at some point, I may have to go on disablity. I am a RN and work in Labor and Delivery. I see a cardiologist this week. Just am trying to find answers and any suggestions and others that have mito. HI , Welcome to the group. I am 27 yrs old, also have my RN degree and have had mito symptoms since the age of 14. I also had an abnormal exercise test and have muscle weakness on PFTs. I have been on TPN since the age of 16 and have significant GI dysmotility. I don't know how affected you are symptom-wise, but working on a typical nursing floor would be extrememly demanding for me. I worked in homecare for awhile and currently work with a program that I developed for teens and young adults with special healthcare needs to help them prepare for the transition to adulthood with a chronic illness. This allows a lot more flexibility in my schedule. Pacing yourself is key to living successfully with this disorder. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Welcome! Although the reason you are here really bites, you will find that this support good will be so beneficial. Shell-shocked, angry, denial....those are words that flooded me when I first learned through bloodwork that I had PSC....back in 1997. It was a couple of months later that I found this site...before that, anything I looked up on PSC was dismal and very frightening. I was listed 2.5 years ago, and still have a lower MELD score where it will probably be a couple more years before transplant. The good thing is this disease can be a very slow process. There are many complications of the disease. Fatigue and Insane itching are my main concerns right now. I have always tended to -tune-out things that would be happening farther down the road to prevent myself from circuit-overload. This disease and the treatments can be so overwhelming. Medications that work for one person, may not help the next person...and so on. The best advice is to ask your doctor alot of questions - except, right now you probably don't know what questions to ask, but as you learn stuff here, you can ask your doctor, or bounce ideas off us before asking your doctor. I've learned about some of the meds here, and then called my doctor to see if he would put me on those meds. One thing I have learned is to not let PSC terrorize your life. Remember, you still have a life to live and if you give in to PSC and let it control you, then you won't be living your life. We joke alot here because the alternative would to be crying all the time. We weep for those we lose and we pray and cheer for those who get transplants. Whether you are the patience, the spouse and/or caregiver...we are all in this together. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Welcome! Although the reason you are here really bites, you will find that this support good will be so beneficial. Shell-shocked, angry, denial....those are words that flooded me when I first learned through bloodwork that I had PSC....back in 1997. It was a couple of months later that I found this site...before that, anything I looked up on PSC was dismal and very frightening. I was listed 2.5 years ago, and still have a lower MELD score where it will probably be a couple more years before transplant. The good thing is this disease can be a very slow process. There are many complications of the disease. Fatigue and Insane itching are my main concerns right now. I have always tended to -tune-out things that would be happening farther down the road to prevent myself from circuit-overload. This disease and the treatments can be so overwhelming. Medications that work for one person, may not help the next person...and so on. The best advice is to ask your doctor alot of questions - except, right now you probably don't know what questions to ask, but as you learn stuff here, you can ask your doctor, or bounce ideas off us before asking your doctor. I've learned about some of the meds here, and then called my doctor to see if he would put me on those meds. One thing I have learned is to not let PSC terrorize your life. Remember, you still have a life to live and if you give in to PSC and let it control you, then you won't be living your life. We joke alot here because the alternative would to be crying all the time. We weep for those we lose and we pray and cheer for those who get transplants. Whether you are the patience, the spouse and/or caregiver...we are all in this together. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Welcome! Although the reason you are here really bites, you will find that this support good will be so beneficial. Shell-shocked, angry, denial....those are words that flooded me when I first learned through bloodwork that I had PSC....back in 1997. It was a couple of months later that I found this site...before that, anything I looked up on PSC was dismal and very frightening. I was listed 2.5 years ago, and still have a lower MELD score where it will probably be a couple more years before transplant. The good thing is this disease can be a very slow process. There are many complications of the disease. Fatigue and Insane itching are my main concerns right now. I have always tended to -tune-out things that would be happening farther down the road to prevent myself from circuit-overload. This disease and the treatments can be so overwhelming. Medications that work for one person, may not help the next person...and so on. The best advice is to ask your doctor alot of questions - except, right now you probably don't know what questions to ask, but as you learn stuff here, you can ask your doctor, or bounce ideas off us before asking your doctor. I've learned about some of the meds here, and then called my doctor to see if he would put me on those meds. One thing I have learned is to not let PSC terrorize your life. Remember, you still have a life to live and if you give in to PSC and let it control you, then you won't be living your life. We joke alot here because the alternative would to be crying all the time. We weep for those we lose and we pray and cheer for those who get transplants. Whether you are the patience, the spouse and/or caregiver...we are all in this together. Cindy Baudoux-Northrup Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi Kim, Sorry about your husband's diagnosis, We are glad that you found us. A lot of the information that you find on the web is dated, they have and are making advances. A couple of good links are; - http://www..demon.co.uk/ - http://www.psc-literature.org/ The disease although not curable at the moment it is not a death sentence. I was diagnosed when I was 33 and am living mostly symptom free (some fatigue and occasional itching) 19 years later. Tell us where in the world you are and someone in that area will respond with what doctor and hospital they us. Any question you have someone in the group has had similar experiences and will share their insight. You are not alone, we will pray for you and give you any emotional support we can. Ian (52) PSC 89 My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know where to start. Any help with pointing us in the right direction will be greatly appreciated. The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to nutrition needs or supplements.. We are thinking we need a second opinion. We just don't know where to start with all of this. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi Kim, Sorry about your husband's diagnosis, We are glad that you found us. A lot of the information that you find on the web is dated, they have and are making advances. A couple of good links are; - http://www..demon.co.uk/ - http://www.psc-literature.org/ The disease although not curable at the moment it is not a death sentence. I was diagnosed when I was 33 and am living mostly symptom free (some fatigue and occasional itching) 19 years later. Tell us where in the world you are and someone in that area will respond with what doctor and hospital they us. Any question you have someone in the group has had similar experiences and will share their insight. You are not alone, we will pray for you and give you any emotional support we can. Ian (52) PSC 89 My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know where to start. Any help with pointing us in the right direction will be greatly appreciated. The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to nutrition needs or supplements.. We are thinking we need a second opinion. We just don't know where to start with all of this. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi Kim, Sorry about your husband's diagnosis, We are glad that you found us. A lot of the information that you find on the web is dated, they have and are making advances. A couple of good links are; - http://www..demon.co.uk/ - http://www.psc-literature.org/ The disease although not curable at the moment it is not a death sentence. I was diagnosed when I was 33 and am living mostly symptom free (some fatigue and occasional itching) 19 years later. Tell us where in the world you are and someone in that area will respond with what doctor and hospital they us. Any question you have someone in the group has had similar experiences and will share their insight. You are not alone, we will pray for you and give you any emotional support we can. Ian (52) PSC 89 My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know where to start. Any help with pointing us in the right direction will be greatly appreciated. The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to nutrition needs or supplements.. We are thinking we need a second opinion. We just don't know where to start with all of this. -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi there. I am fairly new here, I was diagnosed in September. Just as the others said, every emotion comes up at some point. It is a lot to take in, especially for something I had never heard of! As for a second opinion, I personally feel an ERCP is the gold standard for a definitive diagnosis. However, I would say an MRI is a close 2nd. Does your husband see a gastro or a hepatologist? It's true that if you have any question, anything at all, someone will have an answer! I'm sorry you had to join us, but I am glad you did! ee > > My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know > where to start. Any help with pointing us in the right direction will be greatly appreciated. > The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to > nutrition needs or supplements.. > We are thinking we need a second opinion. We just don't know where to start with all of this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi there. I am fairly new here, I was diagnosed in September. Just as the others said, every emotion comes up at some point. It is a lot to take in, especially for something I had never heard of! As for a second opinion, I personally feel an ERCP is the gold standard for a definitive diagnosis. However, I would say an MRI is a close 2nd. Does your husband see a gastro or a hepatologist? It's true that if you have any question, anything at all, someone will have an answer! I'm sorry you had to join us, but I am glad you did! ee > > My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know > where to start. Any help with pointing us in the right direction will be greatly appreciated. > The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to > nutrition needs or supplements.. > We are thinking we need a second opinion. We just don't know where to start with all of this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi there. I am fairly new here, I was diagnosed in September. Just as the others said, every emotion comes up at some point. It is a lot to take in, especially for something I had never heard of! As for a second opinion, I personally feel an ERCP is the gold standard for a definitive diagnosis. However, I would say an MRI is a close 2nd. Does your husband see a gastro or a hepatologist? It's true that if you have any question, anything at all, someone will have an answer! I'm sorry you had to join us, but I am glad you did! ee > > My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know > where to start. Any help with pointing us in the right direction will be greatly appreciated. > The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to > nutrition needs or supplements.. > We are thinking we need a second opinion. We just don't know where to start with all of this. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > My husband was just diagnosed with PSC. We are feeling quite shell > > shocked and don't know > > where to start. Any help with pointing us in the right direction will be > > greatly appreciated. > > The doctor has put him on Ursodiol 1200 mg daily and they have only done > > and MRI. He > > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much > > direction with regards to > > nutrition needs or supplements.. > > We are thinking we need a second opinion. We just don't know where to start > > with all of this. > > > > > > > > > > -- > Ian Cribb P.Eng. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > My husband was just diagnosed with PSC. We are feeling quite shell > > shocked and don't know > > where to start. Any help with pointing us in the right direction will be > > greatly appreciated. > > The doctor has put him on Ursodiol 1200 mg daily and they have only done > > and MRI. He > > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much > > direction with regards to > > nutrition needs or supplements.. > > We are thinking we need a second opinion. We just don't know where to start > > with all of this. > > > > > > > > > > -- > Ian Cribb P.Eng. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > My husband was just diagnosed with PSC. We are feeling quite shell > > shocked and don't know > > where to start. Any help with pointing us in the right direction will be > > greatly appreciated. > > The doctor has put him on Ursodiol 1200 mg daily and they have only done > > and MRI. He > > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much > > direction with regards to > > nutrition needs or supplements.. > > We are thinking we need a second opinion. We just don't know where to start > > with all of this. > > > > > > > > > > -- > Ian Cribb P.Eng. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi ee, Thanks for your response. My husband is currently seeing a gastro. I hadn't heard of a hepatologist. Which one is best for this disease? Kim > > > > My husband was just diagnosed with PSC. We are feeling quite shell > shocked and don't know > > where to start. Any help with pointing us in the right direction > will be greatly appreciated. > > The doctor has put him on Ursodiol 1200 mg daily and they have only > done and MRI. He > > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much > direction with regards to > > nutrition needs or supplements.. > > We are thinking we need a second opinion. We just don't know where > to start with all of this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi ee, Thanks for your response. My husband is currently seeing a gastro. I hadn't heard of a hepatologist. Which one is best for this disease? Kim > > > > My husband was just diagnosed with PSC. We are feeling quite shell > shocked and don't know > > where to start. Any help with pointing us in the right direction > will be greatly appreciated. > > The doctor has put him on Ursodiol 1200 mg daily and they have only > done and MRI. He > > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much > direction with regards to > > nutrition needs or supplements.. > > We are thinking we need a second opinion. We just don't know where > to start with all of this. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 Hi ee, Thanks for your response. My husband is currently seeing a gastro. I hadn't heard of a hepatologist. Which one is best for this disease? Kim > > > > My husband was just diagnosed with PSC. We are feeling quite shell > shocked and don't know > > where to start. Any help with pointing us in the right direction > will be greatly appreciated. > > The doctor has put him on Ursodiol 1200 mg daily and they have only > done and MRI. He > > thinks a liver biopsy or an ERCP is unnecessary. We didn't get much > direction with regards to > > nutrition needs or supplements.. > > We are thinking we need a second opinion. We just don't know where > to start with all of this. > > > Quote Link to comment Share on other sites More sharing options...
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