jodeej
@jodeej
@jodeej
Posts: 594
Joined: Jan 13, 2018
jeanne5009
@jeanne5009
@jeanne5009
Posts: 217
Joined: Mar 29, 2018
Mahdi.
Wanting to know the possibility of treatment is exactly the reason that you should call and begin a conversation.
I don't know how the system works where you are, but there would be no obligation on your part by making phonecall and having a conversation. That is the only way to find out if there is any need to set up an appointment for you.
In my case, my transplant doctor called Mayo and begen the conversation. Then he sent my records before Mayo agreed to see me. Then an appointment was scheduled because I needed to be seen by a specialist who was there. I do not know about how anyone else made their contacts.
I would be interested to hear what you learn. If you do need to make an appointment, I will help you if you want.
My gastro Dr. Referred me. FL Research Institute ordered a biopsy as part of a clinical trial for NASH., so I had that and a diagnosis and a Fibroscan.
Liked by Rosemary, Volunteer Mentor
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 4836
Joined: Aug 30, 2011
My gastro Dr. Referred me. FL Research Institute ordered a biopsy as part of a clinical trial for NASH., so I had that and a diagnosis and a Fibroscan.
jeanne, Have your doctors given you and indication if or when you might need a transplant?
You mentioned a clinical trial for NASH, What does it involve? – only if you are comfortable in sharing. Are you still participating in it?
Liked by jodeej
jeanne, Have your doctors given you and indication if or when you might need a transplant?
You mentioned a clinical trial for NASH, What does it involve? – only if you are comfortable in sharing. Are you still participating in it?
I am waiting they said Within two days they will call me
For transplant not determined yet
John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 7036
Joined: Mar 22, 2016
Hello, I have PBC with AI Overlap and am trying to learn more about it. I have suffered with this, among other autoimmune diseases, for years now and I have tried from time of diagnosis to educate myself about something I have never heard of. I've learned that Mayo Clinic is the "gold standard" and highest bar that other medical facilities are compared to so I came here to learn more. I read on Mayo Clinic's Patient Care & Health Information > Diseases & Conditions: Liver Disease, that there are several risk factors that may increase your risk of liver disease, including exposure to certain chemicals or toxins. Where does one find information about which certain chemicals and toxins these are and how they affect the liver? Thank you.
Hello @cinnamon215, I know it's difficult dealing with multiple autoimmune diseases and especially when there are a lot of unknowns. I'm really glad to see that you are learning as much as you can about your health condition and being a strong advocate for your health. There is another discussion on Connect that is similar to yours where your post may get much more visibility. I'm tagging our moderator @ethanmcconkey to see if he is able to move your post to the following discussion where you can meet other members discussing Primary Biliary Cholangitis and Autoimmune Hepatitis.
> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
— https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/
Here are a few links that may help answer your question – which chemicals and toxins affect the liver.
NIH – Toxic hepatitis in occupational exposure to solvents
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374978/
Industrial Chemicals Associated with Toxic Hepatitis
— https://www.haz-map.com/heptox1.htm
Common toxins to avoid
— http://loveyourliver.com.au/common-toxins-to-avoid
Do you think you may have been exposed to any hazardous chemicals or toxins?
Liked by Rosemary, Volunteer Mentor, cinnamon215
cinnamon215
@cinnamon215
@cinnamon215
Posts: 28
Joined: Sep 26, 2018
Hello, I have PBC with AI Overlap and am trying to learn more about it. I have suffered with this, among other autoimmune diseases, for years now and I have tried from time of diagnosis to educate myself about something I have never heard of. I've learned that Mayo Clinic is the "gold standard" and highest bar that other medical facilities are compared to so I came here to learn more. I read on Mayo Clinic's Patient Care & Health Information > Diseases & Conditions: Liver Disease, that there are several risk factors that may increase your risk of liver disease, including exposure to certain chemicals or toxins. Where does one find information about which certain chemicals and toxins these are and how they affect the liver? Thank you.
Ethan McConkey, Moderator
@ethanmcconkey
@ethanmcconkey
Posts: 874
Joined: Aug 01, 2018
Hi @cinnamon215 you may have noticed that I moved your post to this existing discussion on Primary Biliary Cholangitis, per the request of @johnbishop, in order for you to connect with other members who have similar experiences.
I wanted to introduce you to fellow Connect members, @mahdi123 and @rosemarya as they have had similar experiences to you and may be able to offer you support.
Back to you @cinnamon215 how are your symptoms at this point?
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 4836
Joined: Aug 30, 2011
Hello, I have PBC with AI Overlap and am trying to learn more about it. I have suffered with this, among other autoimmune diseases, for years now and I have tried from time of diagnosis to educate myself about something I have never heard of. I've learned that Mayo Clinic is the "gold standard" and highest bar that other medical facilities are compared to so I came here to learn more. I read on Mayo Clinic's Patient Care & Health Information > Diseases & Conditions: Liver Disease, that there are several risk factors that may increase your risk of liver disease, including exposure to certain chemicals or toxins. Where does one find information about which certain chemicals and toxins these are and how they affect the liver? Thank you.
@cinnamon215, I am sorry to hear of your suffering with several autoimmune conditions. I have vitiligo, an autoimmune skin condition, and that is what caused my doctors to look at possibility of my liver disease also being autoimmune related. I was eventually diagnosed with a different disease that affects the bile ducts, Primary Sclerosing Cholangitis(PSC) and received a successful transplant in 2009.
I especially like the information that @johnbishop shared about Common toxins to avoid (— http://loveyourliver.com.au/common-toxins-to-avoid ) because it is directly related to everyday living. It is my understanding that there is research being done to look at the environmental and chemical toxins.
Since you are new to PBC, I want to share this information about Primary Biliary Cholangitis(PBC) from Mayo Clinic Patient Care & Health Information>Diseases & Conditions. It says that, "Primary biliary cholangitis is considered an autoimmune disease, which means your body's immune system is mistakenly attacking healthy cells and tissue. Researchers think a combination of genetic and environmental factors triggers the disease. It usually develops slowly. Medication can slow liver damage, especially if treatment begins early."
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I hope that this helps give you a perspective on this disease.
How are you feeling? How can I help you?
Liked by John, Volunteer Mentor, cinnamon215
@cinnamon215, I am sorry to hear of your suffering with several autoimmune conditions. I have vitiligo, an autoimmune skin condition, and that is what caused my doctors to look at possibility of my liver disease also being autoimmune related. I was eventually diagnosed with a different disease that affects the bile ducts, Primary Sclerosing Cholangitis(PSC) and received a successful transplant in 2009.
I especially like the information that @johnbishop shared about Common toxins to avoid (— http://loveyourliver.com.au/common-toxins-to-avoid ) because it is directly related to everyday living. It is my understanding that there is research being done to look at the environmental and chemical toxins.
Since you are new to PBC, I want to share this information about Primary Biliary Cholangitis(PBC) from Mayo Clinic Patient Care & Health Information>Diseases & Conditions. It says that, "Primary biliary cholangitis is considered an autoimmune disease, which means your body's immune system is mistakenly attacking healthy cells and tissue. Researchers think a combination of genetic and environmental factors triggers the disease. It usually develops slowly. Medication can slow liver damage, especially if treatment begins early."
https://www.mayoclinic.org/diseases-conditions/primary-biliary-cholangitis-pbc/symptoms-causes/syc-20376874
I hope that this helps give you a perspective on this disease.
How are you feeling? How can I help you?
Thanks for sharing important information
peach414144
@peach414144
@peach414144
Posts: 746
Joined: Jul 17, 2017
Hello @cinnamon215, I know it's difficult dealing with multiple autoimmune diseases and especially when there are a lot of unknowns. I'm really glad to see that you are learning as much as you can about your health condition and being a strong advocate for your health. There is another discussion on Connect that is similar to yours where your post may get much more visibility. I'm tagging our moderator @ethanmcconkey to see if he is able to move your post to the following discussion where you can meet other members discussing Primary Biliary Cholangitis and Autoimmune Hepatitis.
> Groups > Transplants > Primary Biliary Cholangitis and Autoimmune Hepatitis
— https://connect.mayoclinic.org/discussion/primay-biliary-cholagitis-and-autoimmune-hepattitis/
Here are a few links that may help answer your question – which chemicals and toxins affect the liver.
NIH – Toxic hepatitis in occupational exposure to solvents
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374978/
Industrial Chemicals Associated with Toxic Hepatitis
— https://www.haz-map.com/heptox1.htm
Common toxins to avoid
— http://loveyourliver.com.au/common-toxins-to-avoid
Do you think you may have been exposed to any hazardous chemicals or toxins?
peach414144
@peach414144
@peach414144
Posts: 746
Joined: Jul 17, 2017
How can a person make an appointment with Mayo for more than just one medical problem. In other words multiple medical problems which work together to bring on the many problems? Does the Mayo only take one medical problem at a time and not consider the whole? Sincerely, peach414144
Liked by John, Volunteer Mentor
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 4836
Joined: Aug 30, 2011
How can a person make an appointment with Mayo for more than just one medical problem. In other words multiple medical problems which work together to bring on the many problems? Does the Mayo only take one medical problem at a time and not consider the whole? Sincerely, peach414144
Good morning, @peach414144. I found a link that will address that question, and I want to share it with you. Appointments FAQ https://www.mayoclinic.org/appointments/faq
Liked by John, Volunteer Mentor
peach414144
@peach414144
@peach414144
Posts: 746
Joined: Jul 17, 2017
Good morning, @peach414144. I found a link that will address that question, and I want to share it with you. Appointments FAQ https://www.mayoclinic.org/appointments/faq
Thank you both. Very informative information. I do appreciate. Peach
Liked by Rosemary, Volunteer Mentor
Rosemary, Volunteer Mentor
@rosemarya
@rosemarya
Posts: 4836
Joined: Aug 30, 2011
@rosemarya
Mahdi.
Wanting to know the possibility of treatment is exactly the reason that you should call and begin a conversation.
I don't know how the system works where you are, but there would be no obligation on your part by making phonecall and having a conversation. That is the only way to find out if there is any need to set up an appointment for you.
In my case, my transplant doctor called Mayo and begen the conversation. Then he sent my records before Mayo agreed to see me. Then an appointment was scheduled because I needed to be seen by a specialist who was there. I do not know about how anyone else made their contacts.
I would be interested to hear what you learn. If you do need to make an appointment, I will help you if you want.
Liked by Colleen Young, Connect Director