1. < Autoimmune Diseases

Mistrust in doctors

Posted by Lisa @techi, Nov 28, 2017

In the last month l had no problems with my autoimmune encephalitis disease or maybe my liver. The doctors don't really know and it's so aggravating when you try to tell them and your family even sees it. It's been along journey but you try to be strong. And l had no problem in the last few months. It's a shame when people who have seen you fall or can't walk sometimes and you have to be helped even to the car and they always ask you are you alright and that's good. But your a person who doesn't want to be always seen that their is a health issue and the doctors you go to either see you as mental or your depressed or have anxiety. And maybe are depressed because of their mistrust of their patient. And l have told my general practice plenty of times about your problem just not to believe. And it caused you to have your cal torn a d 3 root canals from falling and encephalitis to just be told you had a 104 temp and told you had the flu and not being admitted to the hospital. And several times unconscious because you said your head hurts and to have headaches for days. And then have so many neurologist who think you want attention and you have worked for years and when you are sick you still come to work. And then told you that you were an exceptional employee and was told by Vic rehab when your trying to get a job. And went to college for 7 years and get a 2yr degree and the Lord didn't lett you give up and your director of the program say because of your disability you won't he able to work. And patients you worked with would cry or can't understand your finish with your clinical. And then the last 2 different neurologist one who said didn't l tell you why your coming l told you everything is alright and you were trying to get off medications and the other say if you go to the ma mayo clinic you will get the same diagnoses l told you because l am correct. And that's ego because he thinks he could have made a mistake and find out when he told you that you were ment and find out they misdiagnosed you. Then to have to go to the Mayo Clinic for thev4th time just to be told the liver procedure they did was incorrect and you were to be seen often to make sure everything is wrong with one shunt and have to have the procedure done for a second time. And now to think you don't have to have your lifeline anymore because your not falling. And then after doing home improvement and having fun because it was like the good old days and be able to talk to your neighbors and walk your dogs. And after 2yrs of driving you were released to go back and your memory was like before you started before you started with the beginning with your illness. To today when you were working with your husband and then to get dinner and your husband knows something is wrong and your talking slow to when you try to walk to the door and can't.. And if you tell your doctor he would say the same thing your depressed and want attention. Then you try to go to your bed and can't pet the dogs because they know something is wrong. And you get a package and can't open it because your hand won't stay still. And you can't turn over in your bed.and your nauseated. Just to want to tell your doctor what's going on but not being believed again. And l forgot to say to your husband have to walk you inside your house because he knows you fall because it has happened so many times before. And then after so many month not wearing your lifeline you have to wear it again because you might fall when your husband go to work or you try to go to the mail box. Because this has happened before and you don't want your neighbors to call th Dr. Because when you get there the psychiatrist comes in and ask you did you want to commit suicide. And now you are afraid to go to the hospital because you will be vomited to the mental hospital before because you where given medications you are allergic too. And you tell the nurses and doctors that a med they give you has an ingredient that you are allergic too. And doctors and nurses are so careful what they give you because they can't believe how many meds you are allergic too. Because when you were only allergic to 1 for years and now you are allergic to 13 or more because of them. And now you mistrust doctors or the ones you go to doesn't want to handle your case because you have been through to much or there's to many misdiagnosed or they don't know what's to do. So where0 do you go or their so many diagnoses it can be and they know one doctor have diagnosed you and they don't want to say anything otherwise when they know the diagnoses is wrong because of code of ethics instead of the patient deserve the best care. So when there are very few doctors who know about autoimmune encephalitis disease onlyv2 at the Mayo Clinic and you already been to one and she doesn't specialize in that and she says everything is normal and you have read a lot about the disease and the patients that all test are normal then you are right away given psychotic meds and turn over to a psychiatristor put in a mental hospital. And these same things has happened to others. So now l have not much trust in doctors in my state because their is only one doctor is suppose to be trained in autoimmune encephalitis disease and her reviews are horrible and you went to one neurologist at the Mayo Clinic and dontvthink you can go to another because this has happened before so now l have to travel to Duke hospital if l want to be treated and this isn't easy and very costly and you can lose everything you worked for just to get help so l know their are many who have gone through the same thing because that's the world we live in so that's why you have to keep praying because doctors are only human and don't want to say l just don't know. And when you treat one person it's not the same way for the other. And instead of of having patients go through so much and their bills are climbing just try and help and if you can't send them to someone who might know about their medical.condition instead of causing the patient so much headache and so much mistrust

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Mentor
John, Volunteer Mentor | @johnbishop | Nov 28, 2017

Hi Lisa (@techi), I wished I had some magic words that could help. It's good to express how you feel. I don't think you are alone with your feelings, especially in the area of autoimmune and other hard to diagnose diseases. I think with few exceptions, like in any profession, doctors really do try to help the patient but they can't possibly know every disease and how to treat it. Even the cherished Dr. House had his demons and challenges although he always figured it out. It kind of reminds me of the song "It Takes a Village" only for me I think it takes a team of medical specialists to get to the bottom of some of the really hard diagnosis. My complaint is that I (me, not the doctor) did not advocate for a treatment sooner for my peripheral neuropathy. The doctor told me it was probably nerve damage and they could do tests to determine if that was the case. And I in my infinite wisdom asked if it is nerve damage, what can be done. I was told nothing so I decided why bother with the tests. I waited 20 years before getting a diagnosis of idiopathic small fiber neuropathy and this started me on my journey of being a better advocate for my health. While it didn't do anything for the neuropathy, it has helped me with other health issues.

I do get the honor of "training" a new doctor every couple of years as they rotate through the family clinic I use. To me, it is an eye opener for them as well as myself when I keep asking them questions and then they have to go to their team leader for a consultation. Not so fun sometimes, rewarding other times.

Hoping you have a pain free day.

John

REPLY
1 reply
Lisa | @techi | Nov 28, 2017

Yeah John your right that doctors are human and their is so much they don't know but sometimes l just don't feel like being their ginnie pig just tell the truth. I don't know. And l wouldn't even go to them because l know my God can heal but sometimes you have to go through to increase you faith and trust him. And sometimes you might have to help someone else and lift them up. Just like you do to me and others but sometimes you just get tired of falling and not being believed. And have to travel somewhere else or keep looking for the doctor who will help. I found one and we laughed because he did his clinical where l use to live. And he told me if we need to do your procedure right away l will do it personally. That felt a little comforting and another doctor who told you they did the procedure wrong. And l know for sure l am blessed and highly favored because just to be able to write is a blessing and getting my memory is also when you told the doctor you didn't have dementia and not to except a generalerational curse of members in your family who had dementia and then died of Alzheimer. And then because of that family history right away that your diagnoses when you had memory issues from a brain injury and they can't explain God's blessing. And l always looked at JOB because he went through but came out with double what he had before and that how God blesses. He never give you more than you can bear. So l pray that they find out what's going on so l can be able to take care of my grandchildren so my family are not scared if something may happen if you have them alone np. But l am always glad to hear from you and the inspiration that you have for all of us. That's what l call a blessing take care of yourself and l will be praying for youalso.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 28, 2017
In reply to @techi "Yeah John your right that doctors are human and their is so much they don't know..." + (show)
@techi

Yeah John your right that doctors are human and their is so much they don't know but sometimes l just don't feel like being their ginnie pig just tell the truth. I don't know. And l wouldn't even go to them because l know my God can heal but sometimes you have to go through to increase you faith and trust him. And sometimes you might have to help someone else and lift them up. Just like you do to me and others but sometimes you just get tired of falling and not being believed. And have to travel somewhere else or keep looking for the doctor who will help. I found one and we laughed because he did his clinical where l use to live. And he told me if we need to do your procedure right away l will do it personally. That felt a little comforting and another doctor who told you they did the procedure wrong. And l know for sure l am blessed and highly favored because just to be able to write is a blessing and getting my memory is also when you told the doctor you didn't have dementia and not to except a generalerational curse of members in your family who had dementia and then died of Alzheimer. And then because of that family history right away that your diagnoses when you had memory issues from a brain injury and they can't explain God's blessing. And l always looked at JOB because he went through but came out with double what he had before and that how God blesses. He never give you more than you can bear. So l pray that they find out what's going on so l can be able to take care of my grandchildren so my family are not scared if something may happen if you have them alone np. But l am always glad to hear from you and the inspiration that you have for all of us. That's what l call a blessing take care of yourself and l will be praying for youalso.

Jump to this post

Thank you Lisa...I need all the help I can get (really!) ☺

REPLY
peach414144 | @peach414144 | Nov 28, 2017
In reply to @techi "Yeah John your right that doctors are human and their is so much they don't know..." + (show)
@techi

Yeah John your right that doctors are human and their is so much they don't know but sometimes l just don't feel like being their ginnie pig just tell the truth. I don't know. And l wouldn't even go to them because l know my God can heal but sometimes you have to go through to increase you faith and trust him. And sometimes you might have to help someone else and lift them up. Just like you do to me and others but sometimes you just get tired of falling and not being believed. And have to travel somewhere else or keep looking for the doctor who will help. I found one and we laughed because he did his clinical where l use to live. And he told me if we need to do your procedure right away l will do it personally. That felt a little comforting and another doctor who told you they did the procedure wrong. And l know for sure l am blessed and highly favored because just to be able to write is a blessing and getting my memory is also when you told the doctor you didn't have dementia and not to except a generalerational curse of members in your family who had dementia and then died of Alzheimer. And then because of that family history right away that your diagnoses when you had memory issues from a brain injury and they can't explain God's blessing. And l always looked at JOB because he went through but came out with double what he had before and that how God blesses. He never give you more than you can bear. So l pray that they find out what's going on so l can be able to take care of my grandchildren so my family are not scared if something may happen if you have them alone np. But l am always glad to hear from you and the inspiration that you have for all of us. That's what l call a blessing take care of yourself and l will be praying for youalso.

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i have and still go through the same experiences with the doctors. uncaring and everything else that goes with it. it appears that this will continue till the end of time. it is hurtful to the patients and takes away your trust in the doctor. BUT.... you must continue on and believe in yourself and somehow continue to show respect to the doctor so you will be treated accordingly. we need the doctors no matter what their attitude is. if you can, learn to use the medical books to look up whatever you can so you can keep up with your care. with much caring, peach barbara

REPLY
Lisa | @techi | Nov 28, 2017

Yes Peaches you are absolutely right but when a doctor you don't want to go to and the hospital say that's their policy that you see the same doctor you saw before and you find that out when you went to your appointment. And thought you were seeing the doctor you wanted that's absorbed and l would have cancelled that appointment. Then l was going to a neurologist l don't have trust in anything I say. Then l wanted him to help me to get off some of my seizure meds and he say l saw you before and l told you everything is alright I have really not satisfied with doctors right now even my general practice doctor. So l know l have to start all over again to find a doctors. And we are the worst state in the US in medical care. We rate 48. So now l have to find a doctor here or go put of State that's why l went to the Mayo Clinic for the answers. So l really don't know if l go to a neurologist or a neurologist. And l was sent to a gasterentogist/ hepatologist and didn't know why be cause my general practice doctor didn't even tell me so l had to do my research and l saw they specialize in the liver and liver transplant but still don't why? And he says your liver procedure might have to be done again but l will look at the film's
And the Mayo clinic doctors said they want to do it and l have it done there. It gives you some relief a doctor cares and even the one in my state that freak. But l hate to search for doctors and you have to go to visits to find the right one. And reviews are great but sometimes you don't see the way they see the doctor because even one is different and they judge the doctor on the problems they have. So that's why l hate this because l give a doctor such along time to make me not trust them. I say sometimes they might have a bad day. I been with doctors maybe 10 or more years before l wake up and sometimes say there not the right one. And l need to do better but l just don't and that's crazy but l just don't like to go through all that trouble but l am learning. So tomorrow l go to see a rheumontologist and he might not be the one to go to. The if he's not the one l have to begin searching but l first have to learn how to drive again. And then l.have to see if that's safe because all the things that happened yesterday that hasn't happened before because l don't want to kill anybody or myself. So l have to see if l can get a med or l do something that will hell me to help with theses issues because you just never know when it will happen. Your wonderful to help about what l need to do. Thank you

REPLY
1 reply
oldkarl | @oldkarl | Nov 28, 2017

@techi Hi, Lisa. I have spent my entire adult life trying to do things which will help people fight off the demons that mess with our lives. So it is really frustrating to me when I just feel I cannot reach out and touch you and heal you when you hurt so badly. It just seems so sad when I finally come to the point of knowing that all I can do is pray a little, study a little, write a little, hope a little, and in these actions touch you a little. But whatever you do, just know that I will be there with you. About 60 years ago I wanted to go to Duke to get my schooling, and if not Duke, Vanderbilt. I applied both places and was accepted academically. But I had to have more help, and the only way I knew to get there would have been to play football....NOT basketball. But the schools and I learned that I had suffered around a dozen concussions, and neither school would take me. So now perhaps you will be going to one of them to have an impact on them as they might have an impact on you. If you do get there, tell them hello from me. In the meantime, think about me and the rest of the gang here and how we work to support each other. I was in Nashville a month ago, and if I had known about your needs, perhaps we could have shared a cuppa. But it didn't happen, so just know we are thinking about you and your needs. God give you peace. old karl

REPLY
peach414144 | @peach414144 | Nov 29, 2017
In reply to @techi "Yes Peaches you are absolutely right but when a doctor you don't want to go to..." + (show)
@techi

Yes Peaches you are absolutely right but when a doctor you don't want to go to and the hospital say that's their policy that you see the same doctor you saw before and you find that out when you went to your appointment. And thought you were seeing the doctor you wanted that's absorbed and l would have cancelled that appointment. Then l was going to a neurologist l don't have trust in anything I say. Then l wanted him to help me to get off some of my seizure meds and he say l saw you before and l told you everything is alright I have really not satisfied with doctors right now even my general practice doctor. So l know l have to start all over again to find a doctors. And we are the worst state in the US in medical care. We rate 48. So now l have to find a doctor here or go put of State that's why l went to the Mayo Clinic for the answers. So l really don't know if l go to a neurologist or a neurologist. And l was sent to a gasterentogist/ hepatologist and didn't know why be cause my general practice doctor didn't even tell me so l had to do my research and l saw they specialize in the liver and liver transplant but still don't why? And he says your liver procedure might have to be done again but l will look at the film's
And the Mayo clinic doctors said they want to do it and l have it done there. It gives you some relief a doctor cares and even the one in my state that freak. But l hate to search for doctors and you have to go to visits to find the right one. And reviews are great but sometimes you don't see the way they see the doctor because even one is different and they judge the doctor on the problems they have. So that's why l hate this because l give a doctor such along time to make me not trust them. I say sometimes they might have a bad day. I been with doctors maybe 10 or more years before l wake up and sometimes say there not the right one. And l need to do better but l just don't and that's crazy but l just don't like to go through all that trouble but l am learning. So tomorrow l go to see a rheumontologist and he might not be the one to go to. The if he's not the one l have to begin searching but l first have to learn how to drive again. And then l.have to see if that's safe because all the things that happened yesterday that hasn't happened before because l don't want to kill anybody or myself. So l have to see if l can get a med or l do something that will hell me to help with theses issues because you just never know when it will happen. Your wonderful to help about what l need to do. Thank you

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dear techi, i do agree with oldkarl. i do care for you and the others of us who have had the dissapointment of our care from our doctors. it does hurt and does not help our medical needs. am i becoming paranoid or is this really happening? yes, yes, yes it is happening. what can we do? but first of all keep believing in yourself and love yourself as we love you.

REPLY
Lisa | @techi | Dec 5, 2017

@oldkarl My son lives in Tennessee and he wanted me to go to Vanderbilt when l first got sick but I didn't want to go. Then l read about a doctor who want wondering about why patieny with autoimmune encephalitis was always diagnosed with a mental condition. She found out they had the same symptoms and all their test were normal.so she did some reach and found out it didn't mean they were mental and so when they were given a medicine they were better. So the autoimmune encephalitis alliance are trying to get doctors to not rush to a diagnosis because the test can be normal but to also think it could be an autoimmune encephalitis disease when the has the symptoms of mental condition. A news reporter who had autoimmune encephalitis was going through the same thing as I and was placed in a mental ward and she wrote a book brain on fire. And their was a doctor from another country that knew about the symptoms and what she was going through and he helped her and she is doing great. I found a story that was true about an attorney in MN that the doctors didn't believe him and his wife who was a nurse wasn't believed of the diagnosis he was given and she told her friend and the friend knew Dr.Britton at the Mayo Clinic and he was trained on autoimmune encephalitis and he helped him and now he's back to working as an attorney but he still has some memory issues. And when l told my doctor about my situation l wasn't believed also and I was in the mental hospitals 3 times but God wouldn't let me to except the diagnoses of my neurologist and I had been to 4. So when I went to the Mayo Clinic the neurologist thought the same thing the other neurologist said was the same. They sent me to 2 psychiatrist and then was going to send me to a 3rd but I also had elevated ammonia levels and was told they didn't do the procedure right and also they had misdiagnosed me with a mental condition and in my state we only have 1 doctor who is trained in autoimmune encephalitis so that's why we have to get the word out because no one wants to be in a mental hospital for a disease that really is a disease that can save their life.

REPLY
oldkarl | @oldkarl | Dec 5, 2017

@techi That's a terrific story, Lisa. I have a lot of trust in Vanderbilt and their work. I wish that while I was in Nashville last month that I had time to go there for a consultation. But, things are what they are. Also, I would probably look for a way to get there now if I had not found the sFLC assay from Bindings. The doctors here are slowly coming around. I don't know whether they are just lazy or incompetent or perhaps I have BO. However, now that we know what I have, getting treatment is just something that probably will not happen. The docs just say my case is too complicated and they do not have time to work with me now. And besides that, Trump will kill medicare and Obamacare as soon as he can, and the docs know they will not get paid when that happens. At least, that is what they tell me.

REPLY
4 replies
peach414144 | @peach414144 | Dec 5, 2017
In reply to @oldkarl "@techi That's a terrific story, Lisa. I have a lot of trust in Vanderbilt and their..." + (show)
@oldkarl

@techi That's a terrific story, Lisa. I have a lot of trust in Vanderbilt and their work. I wish that while I was in Nashville last month that I had time to go there for a consultation. But, things are what they are. Also, I would probably look for a way to get there now if I had not found the sFLC assay from Bindings. The doctors here are slowly coming around. I don't know whether they are just lazy or incompetent or perhaps I have BO. However, now that we know what I have, getting treatment is just something that probably will not happen. The docs just say my case is too complicated and they do not have time to work with me now. And besides that, Trump will kill medicare and Obamacare as soon as he can, and the docs know they will not get paid when that happens. At least, that is what they tell me.

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dear oldkarl, peach here. ahhh! a good post. i like it. right to the political sore spots. the politicians are not allowed social security. they have their own plans. (much, much, much better than ours. TAKE THEM OFF OF THEIR PLAN WHICH INCLUDES DENTAL AND EVERYTHING ELSE AND PUT THEM ON OUR PLAN. SIT BACK AND WATCH OUR PLAN BE CORRECTED PROPERLY FOR EVERY ONES BENEFIT. who are they to have a much better plan than ours? we are all created the same. how can this be changed? vote them out.

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