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@contentandwell I have never seen a medical staff as so clueless as the doctors here. And to get appointment its very hard because the doctors are retiring or leaving the medical profession altogether because of our healthcare system. But my Hepatologist said l had HE and elevated LFT but he said everything ok right now. He ran a mri and all my lab works. And he set my next appointment in a year and l can see all the things he wants you do before you see him. I have to have lab a week or 3days before my appointment and the the day of my appointment a MRI then you see him. And the hepatologist at the Mayo Clinic said one shunt the blood is dripping so little hes not worried right now. The hepatologist thinks my HE is from my brain injury, first viral encephalitis and then its autoimmune encephalitis. Thats because my ana is extremely high but they say my HE is not active but just fluctuating from previous infection. Its been such along time it all started in 1997. But seemly its doing okay but they are watching me because what l am going through its like its active. And also one shunt the blood is dripping real slow so they are not ready to do the procedure again. I dont know if they think they would have to do my TIP procedure again or if it might get worse that l might have to have another form of treatment. They can do a different kind of procedure before they have to talk about transplant. Then the doctors here thought l was having MS, carpal tunnel and l was psychiatric because of falling and hallucinations. I told them if you fell as much as l you would hallucinate. Then a psychiatrist said l was depressed and l had anxiety. I asked her has she ever been depressed? After that she was finished with me. And all these are symptoms of brain injuries, liver disease, autoimmune disease and so many other diagnoses. And when you are trying to tell doctors whats going on and they dont listen then you would be depressed or have anxiety. Everyone goes through that except Jesus. So sometimes l am not very liked b y doctors because l have to be my own advocate and not let them feed me all their junk. If you dont know l am okay with that just dont waste my time or money. And it seems like when you go to the doctor everyone has to run all these test instead of just looking at your reports and the one that are abnormal then do those over again. If you move to Boston are you going to go to john hopkins? I was going to go there first but l was having problems with my doctor referring me there. Then l called the Mayo Clinic and l had an appointment in 2wks. I wasn't denied and have to get a referral. And l am getting information from the liver foundation. I want to find about all the latest treatments. Have you already have a transplant? I am not at that point and my hepatologist is not talking about that right now. So l am trying to learn all l can because l know that not easy to go through. A good friend of mines is on the kidney list and he doing dialysis right now so l try to lift him up. He had a transplant before so l dont know if he has to wait longer. I know now they are doing transplant on living donors. They say rejection is very low and you usually dont have to take meds for rejection. So l will be praying for you to get better. Have a good evening.
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@contentandwell My ammonia levels were high in 2014 then when my gastroenterologist saw my levels were high he said l had encephalopathy so l had to have a TtP procedure because he saw one extra vein in my liver but l still have encephalopathy at first they had my diagnoses as viral encephalitis in 1997 then autoimmune encephalitis and encephalopathy this was in 2014. So when l went to the mayo clinic they said they didn't see anything active. Then when l saw the vascular doctor he said blood in one shunts was not flowing and he thought l was going to have bleeding in the stomach. When l saw the hepatologist he saidvits dripping but very slightly that they wouldn't do the procedure over unless l was having symptoms of encephalopathy again. He said my ammonia levels will fluctuate which is normal then when l came home to see the hepatologist here thats when he said l have HE. I had herpes before so l was told it would stay dominate in your body and even though its rare you can get encephalitis. I live in Oklahoma and we are behind in the medical system. I use to live in N.Y. and l was told about having shingles in 1978 and then they said herpes zoster which is part of shingles. Here in Oklahoma they just started talking about shingles in the last 8yrs. And they are not talking about autoimmune encephalitis or encephalopathy. There's only one doctor in the state of Oklahoma that l am aware of that knows about autoimmune encephalitis disease and l don't know if she went through training with the mayo clinic or what? But she is listed as one of the doctors in Oklahoma under the autoimmune encephalitis alliance. And we have very few neurologist here. They are trying to get more but l dont know if its because of pay or more people with dementia and Alzheimer's. So l still see a hepatologist and he said l dont need to see a neurologist and they think all my problems were do to my medicines because l have so many allergic reactions. And just to think l was only allergic to codeine for years until 2014 when my ammonia levels were elevated. My hepatologist also said l have and elevated LFH l think that the right way to say it. And my rheumatologist said my ana is still high. So they told me thats normal when you have an autoimmune disease. So l am praying. I ready to leave Oklahoma and l keep asking God where he wants me to go.l wanted to go to MI, Boston or TN but l am just waiting until he shows me but until then l am just getting my house together for when l move.
@techi Lisa, you certainly have had a very complex history. It's hard to know who is right and if they are missing something but although I have never been to Mayo myself everything I have ever heard is so very positive. I believe it's rated as the number 1 hospital in the country by one rating system (I have seen Mass General rated as #1 on a different one), so I would feel that what Mayo said is probably accurate. There are some big cities in Oklahoma, I am surprised that some of the hospitals there are not more knowledgeable, but here in NH too there is a lot of ignorance about certain conditions. We fortunately are close to Boston though. As I have mentioned my PCP thought my HE was a neurological problem so I went to a neurologist. The neurologist was the first doctor who thought it was a liver problem. From what others have told me, a PCP who is doctor of Internal Medicine should have been more knowledgeable and a liver problem should have occurred to him because I had many symptoms. Family practice doctors who also operate as PCPs would be much less apt to figure it out, they are not as good at diagnosing, I have been told.
Good luck in choosing a place to move to, research the hospitals in each place and figure out which would serve you best.
I hope you have success in your search.
JK
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@techi Lisa, it sounds like things are as under control as they can be. If your HE episodes are from your brain, but you are waiting to get on the liver transplant list, what is wrong with your liver? Also you say "ana is extremely high". What is ana?
I live in southern NH so we can just go to Boston for appointments even though the drive can take two hours mid-day. Johns Hopkins is in Maryland.
I am happy for you that you will be going to Mayo, I am sure they will get to the bottom of things.
JK