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@contentandwell
well I I live in oklahoma and the Healthcare system is not so high tech as many other states.Right now our state is going through a deficit so that effects everything so you must go out the state for better care. But they reassured me at the Mayo Clinic and here that I don't have cirrhosis but I guess that can also be wrong. But at the Mayo Clinic they said it could have been trauma from the biopsy or medication. I don't know where that adds up either. I kn l was sometimes the doctors might not want to everything right up front and I know sometimes they are careful unless they suspected because I don't want to say they are sure. Because everyone is different and there bodies are too and they are learning as we are to. Because my neurologist at the Mayo Clinic knew for sure she knew what the diagnoses that was on my chart was correct to find out it was all wrong except my liver and the vascular doctor had to tell her what was going on but he also said he would have to talk to the gastroentologist /hepatologist. But yes I was reading that HE can turn into cirrhosis so I really don't know where l am right now. I will be at the Mayo Clinic in 12 days and as crazy as it is you really don't know how long until you get there. It seems like they setup the rest of your appointments according to how long they need to see you. But I am really from NY and I am use to more advance Healthcare. I was going to originally going to go to John Hopkins for my autoimmune encephalitis but my doctor was hesitant to refer me because he knew he wasn't really trying to find the answers he couldn't so I called Mayo which I found out it was number1 in Healthcare. Now I don't know if that's so but I do like how they work in teams. And my stomach is bloated and it hurts so I think it ascites. And I b Ave gained a lot of weight but know one seems concerned. I had loss a lot after I had surgery that I went out and brought new clothes. Not smart, so I think I have a lot of fluid and it could be that I am not as active because you are so tired. You know all about that slow today l got out to drive after 2yrs so that was exciting even scary because sometimes I can't even walk but I know when that happens. And it happened only once since March so I thought that was over. So I am so glad to have people like you who understand and have been through it because you can give advice and to tell us what it's like. Because some I can't say all but doctors make you think they know but actually they don't and pride gets in their way when they have to say that they don't know. So. I don't know if they are going to do the procedure again or if it's something else because the nurse definitely doesn't. Or she can't say. And if you have to have a transplant I guess you would have to stay where they did the transplant? And I don't know if you are required to have a certain amount of money before you can get a liver or maybe you have to go on dialysis or something. I have a good friend who has a kidney transplant and he has had it along time now. But now he's in the hospital but it for his sugar and blood pressure so l don't know if that part of the kidney transplant? And my nephew who will probably need one or he does and is not telling us but he is also.having problems with his pressure. But I will definitely let you know when l know what going on. I like Minnesota but this definitely is not the time to go but I have too. So we will see what happens
Replies to "@contentandwell well I I live in oklahoma and the Healthcare system is not so high tech..."
@rosemarya Rosemary l just came back from the Mayo Clinic. I spoke to the liver doctor and he asked me if I had certain symptoms. It was just like he was in my head. But he explained to me about the portal vein and hepatic veins. And he spoke to me that the procedure they did was done correctly but I didn't have liver disease and he asked if I ever had it. So he told me l didn't have encephalopathy. What it actually is , is when I was diagnosed with shingles in 1978 from the chickenpox it stayed dominate in my body and that's when l had encephalitis in 1997. Well you can't cure that so it can stay silent or it can still be active but it's not noticeable. When l was put on antidepressants they thought it was a mental illness when in fact it was always encephalitis and it does fluctuation. So in 2014 when they diagnosed me with autoimmune encephalopathy it was the encephalitis. They might resemble in someway but one has to do with a liver disease and the other doesn't that's why I don't have cirrhosis. Now when it affects internally it can affect some of the other organs but it didn't affect my liver. So he told me jokingly you just made different. That's for sure. So he's taken me off the lactulose. He gave me an example when l fall my brain is not signalling the rest of my body. I really enjoyed speaking to him. So now l guess the need to have a group for encephalitis.
@techi Lisa, I am so happy for you that you have finally gotten a real diagnosis. I know how miserable it is to go along without one. There is nothing like these major medical centers when it comes to diagnosing problems such as these. I will never again rely on the doctors up here in the Manchester NH area, it's off to Boston.
JK
@contentandwell JK l almost started not to go because it was only be a consultation. And 12hrs for a consultation is a little tiresome but truly worth it. When I saw the Dr. It was so amazing when he was asking me questions but when I explained to him about my falling he wasn't really surprised. I was always told l was seeking attention but when you keep falling and don't know why it's a little concerning. After Christmas my daughter-in-law went shopping now that's fun to do buying clothing and l couldn't feel all I was unconscious stable but I wanted to go. So I had to ask her let's wait and hour. I went anyway and I tried so hard to distract her from seeing me unsteady. I know she could see it was having a problem with my balance. I didn't talk about it but every store I went to I grabbed a shopping cart. When I told this to the doctor at the Mayo Clinic he really didn't seem surprised. I didn't like his recommendation either but I knew he was absolutely right. He said you are going to have to use a walker or cane. You know pride can stand in the way but I have to look at safety. And when we finished with my appointment, he gave me his card and he told me if you have any problems call. I was so happy to get a second opinion because only you know your body. And sometimes doctors feel it one patient fits the symptoms that the are familiar with then that's the same symptoms and the cure is the same. But that's definitely false God has created us all different. And what works for you may not work for me. So that's what doctors have to understand. And if they have to research like doctors use to before. But I can only say is keep on asking questions and you may not get the answers from one doctor but move on to the next. I have done that but not with my gp and I thought he was trying to help me. But instead whatever diagnoses another doctor has put on your chart that's what the diagnoses will be. But I found out with the Mayo Clinic you had a team of doctors working together. And I am sure there are some that work together and some that might not but you want to find an answer. And he listened and he felt the pain I was struggling with in trying to find an answer. I am praying for you!!!
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@techi, I want to wish you a Merry Christmas. I hope that you have an enjoyable and relaxing holiday season.
I am happy to see that you will be going to Mayo for your appointment. I will say a prayer that all goes well for you.
Rosemary