Portal vein

You definitely know what l mean. And l don't know if doctors will let you use your phone to record because if they say something wrong you might hold it against them. So l guess l can see that. So l guess you can right your questions down first and then jot down what they say. And l know if they talk to medical you don't understand you ask them to repeat but now in laymen term. But when you fall and pass out anything can be said you said.

I'm sorry l didn't write back sooner but l am going back to mayo clinic in Rochester Minnesota and l was told by several employees they are #1 And if l am not mistaken they are the first Mayo Clinic but l saw the vascular doctor first and he was very honest. He told me the stunts they did in my home state they did it completely wrong. So he also told me one shunt was open and he had to do order an ultrasound of my stomach l guess to see how wide and if l was bleeding. Then he told me he would have to speak to my internal doctor and my neurologist. So my doctor said for me to be seen by the gasterentogist. I don't exactly know why but it's a consult and it also say . procedure. So l am not sure if they will have to do it over again. My prior gasterentogist who retired told me l have the symptoms of cirrhosis but not cirrhosis. And the May clinic said the same. But he told me l should have been checked often to make sure that nothing like this would have happened. So l really don't know if that is where you should go or not. And l really don't know if they would help you if you can't afford it. But call them and see what they can do because you don't want to be on dialysis. I have a nephew who is also having kidney problems. He not on the transplant list yet but he could get there. Also l was watching TV and humaira insurance company came on so you can look at that also. I will definitely praying for you and text me again and let me know what you found out.

Well so far nothing has gone to my brain. In 1997 l was told l had viral encephalitis. Then when l went to the Mayo Clinic my neurologist Dr McEvoy you might know her. She told me in 2014 in my chart it said l had autoimmune encephalitis, encephalopathy also and so many other diagnoses. She said my neurologist in 2014 didn't read my chart he just assumed l had conversion disorder. So after l went through all these test and doctor which l am very thankful she said l was misdiagnosed So they think it was my ammonia levels that made me fall out, hallucinating, and cognitive decline, also depression. So when l came back home l went to my gp and he doesn't know l went to the Mayo Clinic the last thing we discussed l was going to John Hopkins and l probably would have because l heard about a new encephalitis clinic there in the US. But the Lord had another road for me to go because my appointment was setup right away. So when l told h l needed a new gasterentogist he sent me to a liver clinic that does transplants so l don't know what he's doing. So l really can't wait to get back to Minnesota. My internal medicine doctor always said l want you to come here. So l don't know if l have a fatty liver. No one has said anything. They wanted me to come back this month but when we said November nobody seem to think that would matter. So l pray l don't have to have a transplant but if that's what l have to do then l will. I'm trying to lose weight and keep my pressure and ammonia level down. Which l can't tell because l am not getting it tested regularly. The last time l had my levels checked was in Aug so l guess that's alright. I don't know how often that's suppose to be read. And also the neurologist said my ammonia level may fluctuate. And l think that's very true. It's so weird you can walk alright for awhile and then you may get wobbly or just fall. So then you become a housebound person. So.l am blessed l can get out a few times a week but it always have to be with someone. But even though l really can't complain l am blessed to still be here.

I've been swelling lately in my stomach, arms, legs and other places. I was told by the Mayo vascular doctor that my stents surgery wasn't done probably and they were concerned about portal vein to the hepatic veins. I don't know if this is cause of another allergic reaction to medicine or should l be concerned about bleeding in the veins or stomach. Has anyone experienced this before? I am still having problems with my doctors and pharmacy not listening to me when l tell them about medicine l am allergic too. Either they don't document it or l have been given them and thank God l am aware of it before l take it. And then they say l have conversion disorder or depressed. I think they have the problem. Thank you for the Mayo clinic.

Yes l went to a neurologist who l asked my doctor not to send me to but l want to get my release to drive and l told him l went to the Mayo clinic and they told me my memory was fine. I told him it was my liver and l was told l had autoimmune encephalitis and they said they couldn't find anything currently going on, which l looked up about the symptoms and how doctors say it's a mental disease and all your test can come back normal and you still can have it. The neurologist at the Mayo Clinic said l.had the residual of it. She also said l could habe had an allergy to meds. Which is 100% true because my previous gasterentogist said l got the hyperammonia because of medications. So l continue to tell him l could understand were my general practice doctor would want me to see him to make sure l can get the release to drive. He looked up my records and said he gave you the release since Aug well nobody called me to pick it up because somebody would have to go get it since l can't drive. So l continue to tell him about the hyperammonia and l asked him if this could have been why l was passing out and having seizure like symptoms
He told me you had bipolar and schizophrenia. I told him l was cleared of that at the Mayo Clinic they just thought l might not have known how to deal with all that was going on. I also to him the vascular medicine doctor said the stents that was placed wasn't done correctly and he said one isn't flowing like it suppose too. So l just can't wait to see the gastroenterologist at the Mayo Clinic because nobody wants to say they made a mistake. I also told him when l went to the pharmacy twice they gave me meds l was allergic too. And l told my husband what he said and he said l should have went in with you. He told me when l fell l hallucinate and what l said my husband said what he said was true. So l call my general practice doctor office to get my release and nobody knows where it is and he showed me where to very he signed onvery he the computer. I know l can't hold that against them but it seems like l can't go to anyone in this state for help because they are all covering up there mistakes. And l am trying to get off these meds and l really don't know how so l wanted to know who l can ask if l have to go out of state?

Rosemary yesterday l went to the neurologist l didn't want to go to this one. My doctor was suppose to refer to another one l perfect. They called me to setup my appointment and they said l was going to the one l didn't want to go to. They told me doctors don't like taking another doctors patient. Well anyway l go to him and he asked me what l wanted to see him for. I told him l want a release to go back to driving but l had to come to him because my doctor didn't fill out my release form and l can understand he wants me cleared by a neurologist because he is filling put the release. And l also wanted to know if because l was falling due to hyperammonia and l was told l had autoimmune encephalitis disease and l possibly had the residual from all my problems. He looked on my chart and told me you have bipolar and schizophrenia. I told him l was cleared of that from the Mayo clinic. I didn't want to say where l went for a second opinion but l wanted to also be trueful. He asked me when l went and what test they did. I didn't get into that with him. Then he looked up my chart and was telling me neurologist and psychiatrist l saw. I couldn't remember there names because l was unconscious in the hospital at the time and l told him. I was telling him about the conversion they said l had and can it be from my liver issues. He told me when you.fell in January they checked it and it was normal. I didn't tell him the internal medicine doctor at the Mayo Clinic said in 2015 before the shunt s were put in he wanted me to have an ultrasound of my stomach because when we were on our way home the internal medicine doctor wanted me to have it done. So l did get it done and then that's when the vascular doctor wants me to come back. I asked my general practice doctor to refer me to a gasterentogist since mines retired. So he did and then l got a call from the gasterentogist clinic where my previous gasterentogist worked. I know l am stressed and maybe l am have anxiety but it because of all the lies. Every time l look at my records they have different diagnosis on them and dates l have seen other doctors and my allergy list. I have gone through this with every doctor and when my husband goes with me he also shows them the list. I.am very careful of medicines l take. I will look it up and l also will ask the pharmacy. So l really don't know when they say one of your shunt is open so that's why the vascular doctor wanted me to have an ultrasound of my stomach to see how wide and he said he didn't know if that's why l am having all these problems. Did you have shunt s and where they also not holding your extra veins close? And l want to know if you have regular visits with your gasterentogist? Because the internal medicine doctor was surprised know one has seen my since 2016 and that when my other gasterentogist retired. And when l tell them l never had anything wrong with my liver because when l was on antidepressants l had to get test to make sure l didn't. My other gasterentogist when l asked how l have this hyperammonia he told me it was from the meds. When all this began l only was allergic to codeine now it's about 15 meds l am allergic too. And so this neurologist showed me when my doctor filled put my release form he said in August and the time he had my license suspended is when he told me l couldn't work or drive. And at the Mayo Clinic the doctor l know who knows about encephalitis is Dr Britton but l don't know if you have seen one neurologist can you change to another or if one team is not sure do they consult with different doctors in that field? But they did put on my chart at the Mayo Clinic it could have been allergic reaction. And you don't know what meds you are allergic to because they all say the same reactions. So can you tell me what you had to do? Thank you.

@techy, Hi Lisa. I feel bad that you are still in the midst of such confusion and stress with your medical issues. As an outsider, as a patient myself, I think you need to work to get all your doctors "on the same page" so that there is a consistency in your overall care. Sounds like you have too many opinions here that are not connecting. If I were you, I would make the medical release between doctors happen and these days it should be relatively easy with technology everywhere. You might be able to have the release forms mailed to you so that you can sign and return. That way you do not need to travel to the office (sigh of relief).

From my own experience, I also like to read my doctor reports. I have to admit that I do not understand most of the language at all. One thing that I have learned is that office visits and reports are a accurate picture. of what is happening at that particular time. For example if I looked at my reports from a year ago - they do not reflect what is going on today. Does that make sense? So I would encourage you to not get stressed over some of the medical jargon.

As far as the two doctors in an office thing - Yes, I know what you mean. In some offices, you see a variety of doctors; in others, you are assigned one. I don't know why this is the way it is. It can be uncomfortable and awkward at times.

I am sorry to confuse you about stents. I included that only to point out that sometimes they don't do the job they were intended to do. I think that is the issue that was being discussed at that time.
No, I am not familiar with neurology department.

Lisa, I hope this has been helpful.
Rosemary

Rosemary l understand but what l don't understand is that when you see a doctor in the same hospital and there computers are connected some times it takes awhile for them to acess the communications for instance when you go to the er in the medical connection. Then when l had my ankle surgery my doctor told me it would take 6months before he gets it. So you either have to go and get it and l can't drive so l have to wait until my husband is off or l can have it mailed to me and either send to the doctors office by mail
And my general practice doctor his office they don't always get in my chart. So l always have to make sure he knows what doctors l have seen and make sure my allergy list is always up to date. I have had several times they didn't have all my allergies. Even just this week l saw before he had the correct date when l had my knee surgery and that was 4yrs ago and now they have it one year earlier. I've also seen that he said in 2012 is when l had my liver disease at first they had the right year now it's 2yrs before. And l want to change my doctors but because l went to the Mayo l wanted some of the diagnoses that were not true changed and also l wanted to get my release to drive. Also if he says it takes 6months they can have the records faxed. It only takes minutes. Now l have l am being followed up with a gasterentogist after a year and l have had about 5 neurologist some retired, l don't like or l don't believe there diagnoses. And l had one at my daughter' job that would talk to her and not me and l feel if l am the patient you should talk to me even if l passed out but them become conscious again. That to me is so rude and not professional. I also wanted to know how to wean myself off my medicine because my general practice doctor really can wean off the medicine he prescribed me and any other doctor who is a of different professions l have to go to them. And when l asked this neurologist he told me l don't know your history even though l saw him before and he can read my chart on the computer and he didn't even give me my discharge papers and this has happened twice before and l had to go to medical records to get it. I am just so discusted with the headache in this state. Our medical rates low and l usually like to go to doctors that has their degree from this state and that isn't how you should have to select your doctors. So l know you are right completely. And when the doctor at the Mayo clinic say they didn't do your procedure correctly and you have to go to another state is hard to think that's what happened. So now l have to come the 4th time to the Mayo clinic which l am so blessed he saw that. And l saw that at the Mayo Clinic they ask questions and doctors work together. Especially when one doctor might not seen a symptom before or illness. And l know doctors aren't God they are always learning and what one patients illness or symptoms are not the same so you must listen to the patients. Some people go to doctors just for drugs but some come to get a diagnosis and know what to do with their health so they can get better. That why l always have to listen to other preachers, music and alway remember what Job went through and how he came out. So l guess this is what l have to go through so l can help someone else to let them know they can make it. You have always give me good advice. Thank you. I will let you know what happens when l go to gasterentogist at the Mayo clinic and also in my home state.

@techy - Lisa, I do not understand how all of the medical computers work or how the systems operate, I agree that for us lay people it is confusing. Sometimes my husband tells me, "Don't even try to figure it out."
I hope that you get some things worked out soon. And start to feel better.
Rosemary

Rosemary l wanted to know when you first had problems with your liver did you get dizzy and past out out. Because they were saying sometimes my ammonia,levels can be high and cause me to fall and hallucinate and don't remember anything. The last time l fell l always tell th e doctors l fell flat on my face and my husband and the doctors say I was sitting on the floor. I don't understand that , isn't that weird?