Doctors mistake watch out.

@jenniferhunter I do the same, Jennifer, and did much research but never came across liver problems! My local doctor is highly regarded but he missed the boat on me. The doctor I started with thought I had Alzheimer's after I had one HE episode! She was history as soon as I could find a different doctor.
I was a mystery to my PCP, and my hematologist who I was seeing because my platelet count was low and continually getting lower. It was finally the neurologist I was sent to who hit on it being my liver. Interestingly, my sister mentioned my symptoms to her niece who is a nurse and her niece said it sounded like liver! My sister never wants to interfere so she never told me that until afterward.

@jenniferhunter That's really terrible about your care with the first doctor, but please be assured that not all spine doctors are that callous. My brother-in-law had spine surgery last year in Boston, done by a wonderful doctor who was caring and did a great job.
JK

@contentandwell I'm glad you got it figured out. I think talking to other patients who know these problems inimatly might be one of the better ways to questions what might be wrong, and of course a nurse who takes care of those particular patients would be a great resource too. We just have to keep asking questions until we get answers. All these overlapping symptoms can be very confusing. I've had some neurologists who were pretty sharp too and figured stuff out that other doctors missed.

Thar was a great post. I need to send it to my doctors. Here they are clueless. They just tell me you are psychic and depressed. And l went to my rheumatologist and he has more sense then my general practice doctor. They keep trying to give me antidepressants and sedatives and l have to keep telling him about meds l can't take. So he the next one on the chopping block. And they want people to go to doctors???? And when l tell my insurance not to pay them , they say we have to know question asked. Well isn't that something no wonder they want to run all these test and prescribe medicine that makes your HE worst. But we need to hear from more hospitals and doctors who are researching HE. I go to a lot of journal from the UK because they were dealing with this more before but now it seems like everyone is dealing with it. But l.will definitely pass this on because some people don't have a diagnoses.

Last week l guess l had the stomach flu because l was throwing up for 3days and not eating. Before that l went to after care clinic and the nurse practitioner gave me prednisone 50mg. And my hear was just beating rapidly so l had to go to the hospital. And the doctor diagnosed me with tachycardia and referred me to a cardiologist. And to me he's the best because he ordered blood workup and called me personally to tell me to go to the er stat because he thought l had a embolism. But l didn't Praise God but he still had me do a MRI and CT scan. I am supposed to see him for the results today. But one person mistake can cause you so much trouble. Then l had a flare up we don't know if it's my AE or HE but l can't walk, slurred speech and tremors. I don't get it often but it does happen sometimes. And my PCP didn't have any problems with me driving because l know when l have a flare up. I can't walk. So l have to take 2 meds for my liver so l had two doctors prescribe a refill because l was out of the medication and l have a new neurologist and when he filled out my dps form he said l couldn't drive because l delusional because l didnt know who he was the first time l met him but my follow-up appointment l was talking normal like l knew him a long time. But my doctors don't understand when l dont have both meds l will have problems. So it really isn't my fault because l didnt get my medication that l needed until the 27th because they put me in a psych ward. So l tried to tell dps and they said it's the law if you are not coherent your license is suspended for 6months. So now l have to appeal it but when l tried to explain the women said you won't win because it's a law. So l had to file with ADA because they are discriminating my rights. I even called the live foundation and they said they have heard people who have heard where patients have had issues but never with a patient not getting their medication and being denied there rights. So l just want to know if anyone has had these problems. And l never had an accident since my TBI in 1997. I had to take a driving ed course where they go out with you to drive. And my grandson with autism is learning to drive and he can't speak.clearly or do anything without help. Sounds crazy.

I know l probably talked about me going to the hospital and then they transferred me to the psych ward in December. Well l just got copies of my records from both hospital. Well the first hospital l went to didn't have a list of my meds to be transferred to the psych ward when they sent me there. And then the psych war was giving me a med that l had been allergic to for over 10yrs. Now the hospital had it documented that l was allergic to the medicine. And at the psych ward they were giving me meds that they thought l was still taking. And l have to te these doctors about hepatic encephalopathy
So l called the medical board and I'm going to report the hospitals and the doctors because the symptoms of mood swing and delusion is all part of hepatic encephalopathy and encephalitis. And l am always reading how doctors are misdiagnosing people with HE, AE and encephalitis and they end up in a psych ward or on psych meds. And we are seeing more people on meds instead of being treated for there illness. It's so sorry that doctors are not having continue education on this illness because we are all searching to find the right doctors whi knows about this disease instead of a psych diagnosis. And l was so reading if all test comes back normal it doesn't mean the patient doesn't have the diagnosis sometimes it takes questioning the family and looking at the symptoms.

Hello, @techi,
I moved your message to this discussion you started before so that members here will see your most recent message and can respond.

How are you feeling now?

I personally believe the problem you describe with doctors misdiagnosing people with Autoimmune conditions is common in many medical communities. There are so many of them and sometimes I personally believe that it is easier to diagnose the most common diseases...it's faster and takes less work to research it, test for it or discuss with other doctors. One of my own specialist doctors told me that, in regard to one particularly troublesome symptom that I reported to him, he "didn't have anything for that." Wait? What? I asked him because I knew he would be able to address it. Yet he brushed it off and that was that. He certainly did not refer me to anyone else either. That was really a punch in the gut without any further discussion. Yet I am stuck with him, at least for now. Lisa, I am glad you still have the ability and courage to pursue help. We AI patients need support in many different ways and I am grateful for it wherever it becomes available to me. Thank you for sharing with us. It is a tough road but you can do this. One of my doctors told me "Stress is not your friend." That was simple enough for me to remember and a goal that I reach for daily. Perhaps it would help you too.

Did they do a blood test to determine if you had Hepatitis C?

@nickig5911. Welcome to Mayo Clinic Connect! I’m glad you found us and already asked a question. Are you concerned that you may have Hep C?

I don’t know anything about ammonia. Was just wondering if you had any insight about Hepatitis C. Thank you so much for sharing and you and your brother will be in my prayers.