Patient Comments: Encephalopathy - Type of Encephalopathy

Question:From what type of encephalopathy did you suffer?

Comment from: Sadiethelady56, 45-54 Female (Patient) Published: July 20

I have hepatic enchephalopathy. It's the scariest thing I've ever dealt with and equally as frustrating. I have always been a very strong person, and now I don't trust my decisions. I second guess my decisions, am scared to death of protein, and for a retired cop who's used to having it all under control, it makes me crazy. I find myself just withdrawing from everyone rather than do something stupid. I'm also tired a lot. My sleep schedule is bizarre after years of complete regularity. It's just frustrating and scary. I used to be able to recognize when it was elevated, but now I can't.

Comment from: Emeraldprince, 45-54 Male (Patient) Published: August 31

I was recently diagnosed with Encephalopathy. Wasn't given a specific type. Not alcohol related at all. I rarely if ever drink. Matter of fact drinking until I get a buzz makes my tremors worse. I have memory loss and at times have a hard time speaking when they are bad. I have what appears as seizures. I came from a western European country where I was living when this all started over a year ago. They thought it was all in my head. I am on medicine now but wasn't given much of a prognosis. I am still vague even on what is wrong with me. I will have to talk further with my Neurologist. I live with family and it is hard on him as he is elderly. I don't want to get on disability as I want to get my fianc© here to help me when I have my hard times. I am looking for work that I know I can do.

Comment from: IndPhil, 55-64 Male (Patient) Published: July 20

I had open heart surgery almost a year ago to repair a defective mitral valve and a bypass surgery. During the surgery, the surgeon restarted my heart to observe the repaired valve, and he was not happy with the results, so he put me back on the heart-lung-bypass machine to correct the valve functionality. Following the surgery, it took four days for me to regain consciousness. When I did awake, I had no idea where I was or why I was there. Gradually, with help of my family, I regained at least part of my memory. I was told I had been non-responsive for four days following the open heart surgery. It has now been 11 months, and I am still trying to put all the pieces together. I tried to go back to work about 90 days post-surgery but have not been able to hold a job down. There are times without warning when my mind will go blank and my wife will say, "Where were you, or where did you go?” This has been freaking me out. I now understand that following my open heart surgery I developed "encephalopathy." I am still trying to get my arms around this and am so very confused. There are times I want to cry without warning. I just applied for disability as I turned 62 yesterday.

Comment from: Jodi, 45-54 Female (Patient) Published: July 06

After reading al your information although I am grateful am not alone am so very sad that you share my misfortune. Mine began at 44 after chemical exposure neurotoxins at work and continued as nobody took the stand they promised. I have suffered so much memory loss, cognitive defects, hearing loss, brain atrophy, migraines, sleep issues, and weight loss.

Comment from: 55-64 Female (Patient) Published: October 06

I have Hashimoto's encephalopathy. It is treated with steroids, specifically prednisone or, in my case, Medrol. ( Few encephalopathies are treatable.) It is one of the lesser-known encephalopathies. It is related to Hashimoto's thyroiditis in that the thyroid antibodies attack the neurons of the brain. I thought I was developing dementia. The main symptom at first is short-term memory loss. There can be stroke-like symptoms, tremors, confusion, walking problems, and seizures to name a few. I could have ended up in a nursing home...and maybe some people without more knowledgeable doctors have. Thankfully, I was diagnosed early and treated by a good doctor. I was able to return to work.

Related Medications: prednisone

Comment from: sharon2065, 55-64 Female (Caregiver) Published: October 06

My sister is 65 years old and is hospitalized in an ICU unit in Houston with the diagnosis of encephalopathy. She went from normal activity to confusion to coma in a relatively short time. She is completely unresponsive. The doctors have run all the tests and so far are unable to find the reason for the encephalopathy. Her prognosis is very poor because it is thought that she has had an MI and CVA; she is positive for pneumonia. This is a very confusing disease process.


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Encephalopathy - Symptoms Question: What were the symptoms of encephalopathy in you or someone you know?
Encephalopathy - Diagnosis Question: What types of tests and exams led to the diagnosis of encephalopathy in you, a friend, or relative?
Encephalopathy - Prognosis Question: What is the outlook for a patient you know who had encephalopathy?

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