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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@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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@peach414144 Thank you, Peach. I wish I had some better things to say about our health care, but I am afraid the rest of the nation will follow the current government health care crisis, right down the maelstrom. Can you tell I am descendant of Finnish-Icelandic Vikings? With a little German, Portuguese and Ukrainian thrown in?

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@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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try german, hungaian, russian and brooklyn! ho,ho, ho!

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@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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i think that when some of the doctors cannot evaluate the patients symptoms they place the patients in mental hospitals to cover their ignorance to diagnose. and i think that when they do this, their uncaring attitude is shown. it should be then that a board of doctors should be assigned to follow up with the patient to further evaluate this patient. by doing this perhaps more answers might come to light.

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@johnbishop

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

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A good Dr. is one that will know & admit his or her limitations. A good Dr. will advise a patient to seek a more qualified Dr. in what his patient is suffering from instead of using him or her as a ginnie pig just to make himself or herself look good & possibly causing his patient harm.

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