1. < Liver Diseases
Profile picture for Lisa Lucier, Moderator
Moderator

Liver Diseases Support Group: Let’s connect

Posted by Lisa Lucier, Moderator @lisalucier, May 23 11:18am

Welcome to the Liver Diseases support group on Mayo Clinic Connect.

If you or someone you care about has a liver disease — or you are questioning if it might be liver disease — this is a great place to talk to others with similar experiences. It’s a welcoming forum to learn from each other and share stories about challenges, coping strategies, setbacks and what helps.

Take these steps to participate in the group:

  • Follow the group.
  • Browse topics.
  • Use the group search to find answers to your questions.
  • Introduce yourself.

Let's chat. Please start by introducing yourself. What is your experience, or your loved one’s experience, living with liver disease or possible liver disease symptoms (i.e., what symptoms you've experienced, what type of disease, how long since diagnosis, how it’s managed)? Do you have a question, tip or story to share?

Interested in more discussions like this? Go to the Liver Diseases Support Group.

Profile picture for Rosemary, Volunteer Mentor
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 3 days ago
In reply to @ccballer45 "Hello all, Over the last month, I have dealing with a lot. Started about a month..." + (show)
Profile picture for ccballer45 @ccballer45

Hello all,
Over the last month, I have dealing with a lot. Started about a month ago was at work and had severe muscle weakness in arms and legs. Went to ER did abdominal ultrasound and said I had enlarged liver and diagnosed me with mild steatohepaitis. Bilirubin in blood was 2.0 at time. All other lab blood work and lfts were consistent with fatty liver. Since a month ago I have had extreme fatigue and muscle weakness. I have no appetite and have lost 35 lbs in month. I have developed in last month issues with dry mouth and trouble sleeping at night. I have constant brain fog. I saw hepatlogist and they did abdominal CT scan with contrast and he said my liver is smooth and normal and only shows faint lines of fatty liver. Also performed fibroscan and my results from that were 5.7 and 277. Which he said were consistent with fatty liver and I requested liver biopsy and he said it was not necessary due to current lab and blood test results. He stated all of my symptoms : the brain fog, muscle weakness, are not liver related and to follow up with PCP. My family thinks I am making all this up and it's all in my head. I am worried that all these symptoms are related to end stage liver disease. Has anyone had any experiences like mine? I am alone and very scared and looking for support and answers? I am a 38 year old male with a wife and 2 young kids at home.

Jump to this post

@ccballer45 Welcome to Connect. I'm fully aware of how alone you must be feeling with those uncomfortable symptoms and not knowing what is the cause. I was diagnosed with liver disease years ago, and over time, I experienced some of the symptoms that you are experiencing. In my situation this was a gradual health decline.
Since you have already seen a liver specialist, and they have ruled out liver disease as being responsible for your symptoms, I believe you should contact your primary care doctor (PCP) for further investigation. They will likely want to get you in to see another specialist.
Do you have someone to go with you? It is always helpful to have an extra set of ears - (especially since family thinks you are making this up).
Do you have a primary care doctor that you can contact?

REPLY
Profile picture for petenia1
petenia1 | @petenia1 | 3 days ago
In reply to @ccballer45 "Hello all, Over the last month, I have dealing with a lot. Started about a month..." + (show)
Profile picture for ccballer45 @ccballer45

Hello all,
Over the last month, I have dealing with a lot. Started about a month ago was at work and had severe muscle weakness in arms and legs. Went to ER did abdominal ultrasound and said I had enlarged liver and diagnosed me with mild steatohepaitis. Bilirubin in blood was 2.0 at time. All other lab blood work and lfts were consistent with fatty liver. Since a month ago I have had extreme fatigue and muscle weakness. I have no appetite and have lost 35 lbs in month. I have developed in last month issues with dry mouth and trouble sleeping at night. I have constant brain fog. I saw hepatlogist and they did abdominal CT scan with contrast and he said my liver is smooth and normal and only shows faint lines of fatty liver. Also performed fibroscan and my results from that were 5.7 and 277. Which he said were consistent with fatty liver and I requested liver biopsy and he said it was not necessary due to current lab and blood test results. He stated all of my symptoms : the brain fog, muscle weakness, are not liver related and to follow up with PCP. My family thinks I am making all this up and it's all in my head. I am worried that all these symptoms are related to end stage liver disease. Has anyone had any experiences like mine? I am alone and very scared and looking for support and answers? I am a 38 year old male with a wife and 2 young kids at home.

Jump to this post

@ccballer45 I have hemochromatosis I was tired with some brain fog. Have your iron checked. I have to have a philbotomy every month. Mine is hereditary. There are other types of hemochromatosis so having your iron checked is important.

REPLY
Profile picture for kristinbrooke
kristinbrooke | @kristinbrooke | 3 hours ago

I was diagnosed about 8 months ago with F3 liver disease with advanced cirrhosis. I started exercising and being more mindful of my diet, cutting out a lot of processed food and sugar. I have suffered from anorexia and body dismorphia in the past so this is starting to trigger that thinking! I am feeling lost on what and how much I should be eating. I am currently down to 85 lbs. Any advice?

REPLY
View MoreView Less
Please sign in or register to post a reply.