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Undiagnosed but desperate for help!
I am a 58yo woman and I have long suspected I have liver damage from alcohol abuse of about 15 years. My suspicions were first aroused when I became increasingly sensitive to alcohol and medications of any kind. I had an aha moment in 1999 and quit drinking totally. I have been petrified that it was too late. I have grown increasingly tired and weak and intolerant of medications. I have had numerous Ct and MRI scans which have been normal as has all lab work. Latest MRI was in Feb. The event that I have been so worried about has happened. I got a staph infection of my toe and it won't go away. I have been on Erythromycin, Doxycycline, Cleomycin, and Minoycline. Last med was 2 weeks ago. I am so tired and weak I can barely function. I ended up in the ER after the Minocycline because I was so dizzy with vertigo. Labs were normal. I have Barrett's esophagus which has been diagnosed in the last 2 years ad I am seeing a Gastro at the Digestive and Liver Disease Clinic tomorrow. Should I ask for an MRE? This has been a nightmare. I am a former Critical Care nurse and am not imagining this. I have also had a workup by Neurologist and Rheumatologist for MS. Was diagnosed with Sjogrens. I know this forum is for patients suffering from cirrhosis and I do not submit this post nonchalantly. I think I have undiagnosed liver disease which is getting worse and I need help! Thank you for any ideas you might have.
All of my lab work has been normal. There is only one place in Dallas to get a Fibroscan and to get one I would need a referral to a Hepatologist. Has been impossible with normal labs and MRI.
1 Comments
I just had a Fibroscan. It's $50. JUst make an appointment and self pay.
Hello all, Glad I found you. I just came home from a G.I. visit re:rectal bleeding. Believe it or not, the lab tested me for HIV instead of Hep C, which I knew I had. However I had no clue I had cirrhosis. Now I am scheduled for an ultrasound and a combo endoscopy and colonoscopy. I am confused as to how the Dr. knew about cirrhosis from lab work. He said the "fibrosis" level when questioned. Never heard of it..has anyone? The hepatitis has been one screw up after another.I had no hep B antibodies so just finished a series of 3 injections over 6 months. The Dr. said in order for my ins. to pay for treatment of hep C the bloodwork had to be within 2 mos. The labs I had were 5 yrs. old. I elected not to go through Interferon treatment then as my 55 yr. old husband is in renal failure and I am his onl caregiver, New treatment=new decision. The B innoculations did not work, but I did get that unasked for HIV test,neg. btw..5 yrs. ago the liver ultrasound showed a healthy liver. I don't drink at all though 30 yrs. ago I drank heavily. However if I do have cirrhosis I believe it is from the hep C. Sorry to ramble on so, has anyone heard of this fibrosis lab value? I am confused and worried about how I will continue to care for Joe, as I am burnt out now, which I thought was the cause of my symptoms. Thank you for listening. You are all very knowledgable and brave. Pam
Thanks Tjaz
I so wish you well and hope that your health improves
Please let us know you outcome.
Best to you
.....Kim
I so wish you well and hope that your health improves
Please let us know you outcome.
Best to you
.....Kim
Kim, thank you for sharing your story. It sounds like you have lived through a nightmare but have come out on the other side. The very Best of luck to you and again, thank you so much for your reply.
Hector this sounds like good news and I hope that they can get to the bottom of it. The fact that your heart and liver are not compromised must give you some sense of relief. Let's hope that the current issue will be resolved with minimal downtime.
Tjaz. My Cirrhosis was identified after going to the ER for an infection that wouldn't clear. Kept running a low grade fever and antibiotics were not helping. As it turns out from it was bacterial in nature and caused by having ascites. My liver function tests were elevated and an MRI was performed.
As it turned out I found out that I had Hep C caused by a blood transfusion that I had in the early 80s for an ectopic pregnancy. It was at that time that I was told not only did I have Hep C, but also Cirrhosis.
This was 2 years ago, and I have since taken treatment and cured my Hep C.
I'm hoping for some resolution of my Cirrhosis thru healthy living.
I'm glad that you are going to follow up with your Gastro and hopefully get some answers. It's also wise to take a closer look at the benign tumors on your pancreas and keep a watchful eye. As I stated, I honestly don't believe your symptoms are liver related. Perhaps with the ultrasound this will be confirmed for you.
Keep us posted on your outcome.
Best to you
......Kim
Tjaz. My Cirrhosis was identified after going to the ER for an infection that wouldn't clear. Kept running a low grade fever and antibiotics were not helping. As it turns out from it was bacterial in nature and caused by having ascites. My liver function tests were elevated and an MRI was performed.
As it turned out I found out that I had Hep C caused by a blood transfusion that I had in the early 80s for an ectopic pregnancy. It was at that time that I was told not only did I have Hep C, but also Cirrhosis.
This was 2 years ago, and I have since taken treatment and cured my Hep C.
I'm hoping for some resolution of my Cirrhosis thru healthy living.
I'm glad that you are going to follow up with your Gastro and hopefully get some answers. It's also wise to take a closer look at the benign tumors on your pancreas and keep a watchful eye. As I stated, I honestly don't believe your symptoms are liver related. Perhaps with the ultrasound this will be confirmed for you.
Keep us posted on your outcome.
Best to you
......Kim
I am so glad it isn't liver related. Happy to hear that things are moving in the right direction and hope the Neurologist can help. Best of luck to you and thanks again for your insight.
COMMUNITY LEADER
The good news we learned that my heart is fine. But they discovered other issues unrelated to my heart or liver.
I am going to have further labs performed this week and more changes to my immunosuppresant medications.
I have now been referred to Neurology for further specialized follow up.
This is likely to be a many weeks/months long process but at least things are moving in the right direction.
Hector
I am going to have further labs performed this week and more changes to my immunosuppresant medications.
I have now been referred to Neurology for further specialized follow up.
This is likely to be a many weeks/months long process but at least things are moving in the right direction.
Hector
Thank you Kim. I went to a Gastroenterologist yesterday At UT Southwestern and will have an Endoscopy with Ultrasound in a couple weeks. I have several probably benign pancreatic tumors that they want to get a closer look at.
Out of curiosity, if you have no symptoms how did they diagnose cirrhosis? Was it an MRI?
Itoo have been thinking about Hector, and praying for good news.
Out of curiosity, if you have no symptoms how did they diagnose cirrhosis? Was it an MRI?
Itoo have been thinking about Hector, and praying for good news.
Tjaz. I'm really sorry that you are having issues. It appears that you do not have liver disease as the various tests would have indicated something amiss. I've never had a Fibroscan or liver biopsy, but I definitely have Cirrhosis. When an MRI or abdominal scan is performed liver cirrhosis is clearly evident. My bloodwork is totally normal, but you can't miss a cirrhotic liver on a scan. It's nodular in texture and extremely evident. Fortunately you do not have liver disease but perhaps something that mimics these symptoms. BTW I have Full blown Cirrhosis and zero symptoms.
In my opinion you need to take a GOOD look at those antibiotics that you were on. I'm familiar with all of them and they can cause a multitude of problems. Any type of antibiotic in the Sulfa community should be taken with caution. The fact that you've taken 4 different varieties can create huge havoc particularly if you are sensitive to meds. Not to alarm you but for some they can bring on psychosis. Personally I refuse those meds as I know the effect that they can have. That is where you should focus your attention and do some investigation. On the other hand, with time they will clear out of your system. Our Drs never explain to us the repercussions that certain meds will have. One thing I also know for certain is that antibiotics also cause depression for many. When you read the labels these various sides are never mentioned.
You also mentioned that you had a history of prior alcohol abuse. The reason that I bring this up is because most people with alcohol issues suffer from anxiety and stress. The combo of these can also cause us to feel out of sorts even tho they are not listed as diseases. Stress and ESP anxiety can literally make you sick. They can cause you to feel faint, dizzy, nauseous and a host of other problems. Kinda like post traumatic stress disorder even tho the enemy is yourself. Know that seems hard to understand but it's been documented and effects a great portion of our population.
Just some thoughts for you to think about. Liver disease? I don't think so.
Thyroid imbalance can also be a consideration.
Keep us posted if you need further assistance
......Kim
In my opinion you need to take a GOOD look at those antibiotics that you were on. I'm familiar with all of them and they can cause a multitude of problems. Any type of antibiotic in the Sulfa community should be taken with caution. The fact that you've taken 4 different varieties can create huge havoc particularly if you are sensitive to meds. Not to alarm you but for some they can bring on psychosis. Personally I refuse those meds as I know the effect that they can have. That is where you should focus your attention and do some investigation. On the other hand, with time they will clear out of your system. Our Drs never explain to us the repercussions that certain meds will have. One thing I also know for certain is that antibiotics also cause depression for many. When you read the labels these various sides are never mentioned.
You also mentioned that you had a history of prior alcohol abuse. The reason that I bring this up is because most people with alcohol issues suffer from anxiety and stress. The combo of these can also cause us to feel out of sorts even tho they are not listed as diseases. Stress and ESP anxiety can literally make you sick. They can cause you to feel faint, dizzy, nauseous and a host of other problems. Kinda like post traumatic stress disorder even tho the enemy is yourself. Know that seems hard to understand but it's been documented and effects a great portion of our population.
Just some thoughts for you to think about. Liver disease? I don't think so.
Thyroid imbalance can also be a consideration.
Keep us posted if you need further assistance
......Kim
Thank you Ralph and Hector. Hope you get some answers to your health concerns Hector, and that it is nothing serious.
COMMUNITY LEADER
All I can comment on medically is what I know from my own personal experiences and studies in cirrhosis, hepatitis C, liver cancer and liver transplantation over the last 8 years. I also have many friends who are livr transplant recipients and volunteer at my transplant center were I have met over 500 people who have had liver transplants. So I know of others experiences with advanced liver disease as well as my own.
Keep in mind that routine blood tests like a Comprehensive Metabolic Panel and a CBC certainly doesn't cover all medical conditions. So just because something doesn't show up in standard blood tests doesn't mean something is going on medically. It is the job of your (primary usually) doctor to do a thorough work up; including reviewing your symptoms, medical history, performing a physical exam ordering any further testing needed or refer you to the proper specialist for further evaluation.
For example; tomorrow I will be having a cardiac stress test done by our cardiology department. While all of my standard blood levels and liver tests look fine, I am experiencing shortness of breath, sweating and feeling faint so I have been referred outside of the post liver transplant clinic to have further specialized evaluation and testing done.
Good luck getting to the bottom of your symptoms.
Hector
Keep in mind that routine blood tests like a Comprehensive Metabolic Panel and a CBC certainly doesn't cover all medical conditions. So just because something doesn't show up in standard blood tests doesn't mean something is going on medically. It is the job of your (primary usually) doctor to do a thorough work up; including reviewing your symptoms, medical history, performing a physical exam ordering any further testing needed or refer you to the proper specialist for further evaluation.
For example; tomorrow I will be having a cardiac stress test done by our cardiology department. While all of my standard blood levels and liver tests look fine, I am experiencing shortness of breath, sweating and feeling faint so I have been referred outside of the post liver transplant clinic to have further specialized evaluation and testing done.
Good luck getting to the bottom of your symptoms.
Hector
Hi
I know whats its like to have Liver failure paranoia, I couldnt sleep for 3 months thinking I was about to die of an internal bleed etc etc, it was terrifying! If you google you will see some horror stories of normal labs and ultrasound, yet the person has end stage liver disease, yes it can happen, but its very rare that it would be missed by the scans and bloods you have had to date. Because you have stopped drinking along time ago your enzymes would likely be normal anyway. Even if your liver was struggling before you stopped it has amazing powers to heal over time.
Here in the UK we have private clinics that will do a drink related Liver check, Fibroscan, bloods tests and consultation with a Hep doctor, I didnt need a referral to get one. Im not saying for one minute you need a Fibroscan, but I think your mind does to ease it.
I know whats its like to have Liver failure paranoia, I couldnt sleep for 3 months thinking I was about to die of an internal bleed etc etc, it was terrifying! If you google you will see some horror stories of normal labs and ultrasound, yet the person has end stage liver disease, yes it can happen, but its very rare that it would be missed by the scans and bloods you have had to date. Because you have stopped drinking along time ago your enzymes would likely be normal anyway. Even if your liver was struggling before you stopped it has amazing powers to heal over time.
Here in the UK we have private clinics that will do a drink related Liver check, Fibroscan, bloods tests and consultation with a Hep doctor, I didnt need a referral to get one. Im not saying for one minute you need a Fibroscan, but I think your mind does to ease it.
Is it possible to have symptoms such as fatique, weakness, and sensitivity to medications before abnormalities in labwork and imaging would be apparent? I seem to have gotten so much worse since taking all of the antibiotics for this infection and am beyond scared.
I appreciate you answering my questions more then you can know. I have been watching this forum for awhile and have been very hesitant about asking a question because I know how terribly sick a lot of people are. I don't mean to trivialize the forum in any way.
Congratulations to you Hector on getting your transplant and it appears, to be doing quite well. It is so wonderful to see you on this forum. You are a true inspiration to a lot of people including me.
I appreciate you answering my questions more then you can know. I have been watching this forum for awhile and have been very hesitant about asking a question because I know how terribly sick a lot of people are. I don't mean to trivialize the forum in any way.
Congratulations to you Hector on getting your transplant and it appears, to be doing quite well. It is so wonderful to see you on this forum. You are a true inspiration to a lot of people including me.
COMMUNITY LEADER
That makes sense as you have no risk for having cirrhosis.
Good luck with getting a proper diagnosis.
Be well.
Hector
Good luck with getting a proper diagnosis.
Be well.
Hector
COMMUNITY LEADER
As Ralph said, the only way to know if you have any liver disease/liver damage at all is to have a FibroScan, a non-invasive test or a liver biopsy performed. Typically it takes many decades of injury to the liver before cirrhosis, the final stage of liver disease to develop.
Cirrhosis can also be diagnosed with a simple physical exam by any good gastroenterologist or hepatologist. Since you have had numerous normal scans and blood tests you can't have cirrhosis of the liver. So that is one less thing you need to worry about.
When a person has cirrhosis it can always be seen on any imaging study; ultrasound, CT or MRI scan and typically on blood tests results as well.
I would recommend you talking with your gastro at your appointment about your concerns and they can explain to why, luckily, you don't have cirrhosis.
To learn what cirrhosis and its symptoms are please read the MedHelp "Health Page" "What is Cirrhosis of the Liver?".
Good luck to you.
Hector
Cirrhosis can also be diagnosed with a simple physical exam by any good gastroenterologist or hepatologist. Since you have had numerous normal scans and blood tests you can't have cirrhosis of the liver. So that is one less thing you need to worry about.
When a person has cirrhosis it can always be seen on any imaging study; ultrasound, CT or MRI scan and typically on blood tests results as well.
I would recommend you talking with your gastro at your appointment about your concerns and they can explain to why, luckily, you don't have cirrhosis.
To learn what cirrhosis and its symptoms are please read the MedHelp "Health Page" "What is Cirrhosis of the Liver?".
Good luck to you.
Hector
HI
Generally serious liver disease will show something in the blood if the doctors are looking for liver problems. The best scan for the Liver is Fibroscan,its the only one that is designed specifically for the Liver, it measures stiffness, the other way would be a liver biopsy.
I understand you being alarmed with your lacking ability to fight off infection, what was your white blood count?
Generally serious liver disease will show something in the blood if the doctors are looking for liver problems. The best scan for the Liver is Fibroscan,its the only one that is designed specifically for the Liver, it measures stiffness, the other way would be a liver biopsy.
I understand you being alarmed with your lacking ability to fight off infection, what was your white blood count?
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