Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Hi Tom Welcome to our group. You will find a lot of information and support. My goodness you have a lot to cope with. I am 57 and was diagnosed 3 years ago, I am in good health apart from fatigue, no IB disease - (the other end of the spectrum from you). The word ependymoma lept out at me. I am so sorry they are unable to operate as I know that it is such a painful condition. We have a 26 year old son who was diagnosed with Proctitis several years ago, but last year he had an ependymoma removed, a very straight forward operation with follow up radiation treatment. I mentioned to the neurologist that I had PSC and he knew has Proctitis, but said there was no connection. , who is tree aborist is now fine. So pleased you found our group. Best wishes from the bottom of the world in New Zealand > > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Hi Tom Welcome to our group. You will find a lot of information and support. My goodness you have a lot to cope with. I am 57 and was diagnosed 3 years ago, I am in good health apart from fatigue, no IB disease - (the other end of the spectrum from you). The word ependymoma lept out at me. I am so sorry they are unable to operate as I know that it is such a painful condition. We have a 26 year old son who was diagnosed with Proctitis several years ago, but last year he had an ependymoma removed, a very straight forward operation with follow up radiation treatment. I mentioned to the neurologist that I had PSC and he knew has Proctitis, but said there was no connection. , who is tree aborist is now fine. So pleased you found our group. Best wishes from the bottom of the world in New Zealand > > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 > Hi I was diagnosed with PSC 2 years ago and my symptoms were cracking skin in hands and feet and elevated liver enzimes, I was introduced by a co-worker to a natural product called Immunocal which is said to raise the Glutathione levels in your body and therefore increase your Immune system I took the product and after 2.5 months my liver enzimes returned to normal and my cracking hands have improved radically, it has help me out a that much that I decided to get involved with the company as a consulant so let me know if you want to know more about it. Andre > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 > Hi I was diagnosed with PSC 2 years ago and my symptoms were cracking skin in hands and feet and elevated liver enzimes, I was introduced by a co-worker to a natural product called Immunocal which is said to raise the Glutathione levels in your body and therefore increase your Immune system I took the product and after 2.5 months my liver enzimes returned to normal and my cracking hands have improved radically, it has help me out a that much that I decided to get involved with the company as a consulant so let me know if you want to know more about it. Andre > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 Andre, Why would someone with an autoimmune disease want to increase the immune system? Chaim Boermeester, Israel From: [mailto: ] On Behalf Of andrechelini Sent: Wednesday, February 18, 2009 04:02 To: Subject: Re: Just joining!! > Hi I was diagnosed with PSC 2 years ago and my symptoms were cracking skin in hands and feet and elevated liver enzimes, I was introduced by a co-worker to a natural product called Immunocal which is said to raise the Glutathione levels in your body and therefore increase your Immune system I took the product and after 2.5 months my liver enzimes returned to normal and my cracking hands have improved radically, it has help me out a that much that I decided to get involved with the company as a consulant so let me know if you want to know more about it. Andre > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 Andre, Why would someone with an autoimmune disease want to increase the immune system? Chaim Boermeester, Israel From: [mailto: ] On Behalf Of andrechelini Sent: Wednesday, February 18, 2009 04:02 To: Subject: Re: Just joining!! > Hi I was diagnosed with PSC 2 years ago and my symptoms were cracking skin in hands and feet and elevated liver enzimes, I was introduced by a co-worker to a natural product called Immunocal which is said to raise the Glutathione levels in your body and therefore increase your Immune system I took the product and after 2.5 months my liver enzimes returned to normal and my cracking hands have improved radically, it has help me out a that much that I decided to get involved with the company as a consulant so let me know if you want to know more about it. Andre > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 > > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 > > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 > > Hey there, > > Tom Fenton 41y/male with PSC/NASH/stage 3 liver disease with > cirrhosis. Had Ulcerative Colitis for ten years and developed cancer > and so had colectomy in 1997. Since then, I have elevated > alt/ast/alk phos. My liver is enlarged and I have quite a bit of > pain. In addition, I have an ependymomas at t10-t11 in my spinal > cord. It too, is a autoimmune tumor of my spinal cord which is > ganglion and therefore nearly impossible to remove without paralysis. > > I am on nearly 30 pills a day including Oxycontin, fentanyl patch, > amaryl, spirotolatone, lasix, baclofen, xanax, glucafage, rampmil, > and a few others. > > I was turned down for a liver transplant by CU Hospital for BMI, > Diabetes, Pulmonary Arterial Hypertension, and an existing tumor of > the spinal cord. All in all they felt I was a bad risk. > > I take milk thistle for my liver and am a Christian who prays, but in > truth am at the end of my rope in coping with all of the stress and > comorbidities. > > Anybody out there know of any good books on PSC? How about any > homeopathic remedies that you have tried tha have offered relief. > I'm only 41 and life is pretty crappy right now and the doctors tell > me its just a matter of time, but I've already had the disease for 7 > years and can still work. > > Anyone know what I can expect? Any thoughts? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 You can find a lot of helpful information on the PSC Partners Seeking a Cure web site, www.pscpartners.org Besides the Urso my son takes fish oil as do many others. Check the web site for past newsletters and for the brochure on PSC. If at all possible come to the 5th PSC Partners conference for patients and caregivers May 1st in Chicago. All the information is on the web site. You will learn so much and get the support you need.> Anybody out there know of any good books on PSC? How about any> homeopathic remedies that you have tried tha have offered relief.> I'm only 41 and life is pretty crappy right now and the doctors tell> me its just a matter of time, but I've already had the disease for 7> years and can still work.>> Anyone know what I can expect? Any thoughts?> Quote Link to comment Share on other sites More sharing options...
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