The end

How do you convince a doctor or consultant that what you say is wrong with you needs the proper treatment to fix the problem? A doctor today said I don't have what I think I have because a couple of tests did not show anything. I have read about the complaint that negative results do not mean that there is not the same problem. I said this to the doctor but she was adament that I was wrong. She went on to misinform me on four counts of other ways of prooving there was a problem. Accoding to recent information about the problem she is wrong. These doctors seem to like the idea that I want to be ill with something. Nothing could be further from the truth, as I said I was sick of being sick. When am I ever going to get better? How do I deal with such prejudice as my day to day life is insuffereable at times. Ill, ill and more ill with variation as text book states.

23 Replies

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  • I know exactly how u feel. I think that because there is little knowledge about (especially about FM) it seems that we prob know more than them. I also am sick of being dismissed as if im a hypochondriac. Its horrid being ill n a bit of understanding n belief in us knowing our own bodies would b nice. I hope u get some results soon. Take care

  • I do know how you feel. My GP asked me why I have never had a RA test the whole time I have been at the practice to then refused to let me have one? Because I am not swollen on the joints? Which research as shown is not always the case!

    I also was refused Pulmonary Rehab because I am exercise intolerant to be have another consultant state "it seems strange I cannot walk far?"

  • It seems excessively arbitrary of your doc to refuse you a blood test. If nothing else, to put your mind at rest. Can you get another one to do it? I've had two and no swollen joints either. I'm still not convinced I don't have an inflammatory component but osteoarthritis inflames too so I accept that that probably is the whole problem. Waiting to hear more about polymyalgia rheumatica.

  • This was another GP! he gave me anti flam ointment but all that did was make it worse and my breathing also go worse (I have a couple of lung conditions with heart problems to help) it took me 2 years to get a spirometry test? They just do not want to do tests of any sort it seems?

  • What I find even more annoying is the reply, 'it's your weight, losing a bit will help your condition". OK I'm an adult I know I need to lose weight and am doing but how does my weight affect my shoulder? Arghhhhhh.

  • Hi astitchintime,

    I think it's awful and I agree, there's something going on with these doctors.

    I've come to the conclusion, after speaking with some friends who are doctors that most GP's feel threatened by the rise in 'google-diagnosed' patients. Many feel that when we present them with ideas of what we think we have based on what we've researched, it makes a mockery of their 8 to 10 years of study.

    As to how to how to convince them when you instinctively know you're right...if anybody out there can let us both know, I'd be prepared to pay at least a tenner for any strategy that works.

    In the meantime, I guess we just have to continue doing what we're doing. Stay focused. Don't give up. Be persistent. Write things down. Check that they're actually noting it down on the computer and if necessary, ask if you can have a second opinion. Don't forget to take print out of scientific/medical articles to show them as well.

    All the very best. It's hard but according to my medical friends, for every informed and knowledgeable patient they see, there are at least another thirty who are convinced they have bowel cancer (or insert any other dire diagnosis) when they have IBS or worse still, recurring constipation as a result of their poor diet.

    Wishing you all the best. I'm waiting, tenner in hand!

  • Reykua, I think that the problem is that one test doesn't indicate that you have a disease.. the doctor needs to put a full array of tests, symptoms, history together. It might look like you fit the profile of diseases found on the internet when reading about it but the test numbers might be just a little bit off so that makes it impossible to have the disease that the patient insists that they have. I was caught up in that for some time while I was waiting for a diagnosis.. I had a doctor sit with me to just talk about this and the problem with google diagnosis. They dislike forums a lot too. They believe that poor and wrong information gets circulated in that way.

    I was really bummed out when I was told that. I believe that you are right about keeping that diary of symptoms, foods eaten, medicines taken and activity level to show the doctor. It's one of the most important pieces to the puzzle.

    Many doctors cannot find the time to keep up with what other doctors are doing for treatments or even more than the basic treatments. Some miss diagnosis if the disease is weird or uncommon. I fit that bill. All of the specialists where I live missed all of the symptoms and mistaken it for simple disease. I would ask about the disease but then drop it if the doctor can prove to me that it's not the disease.

  • Thank you so much for your response. I actually agree with what you've said but just thought I'd throw in some information from my doc friends to give everyone the other side of the picture.

    One of the issues we've not raised is 'budgets'. Sometimes, you just won't get the raft of tests you need to 'disregard' the other diseases because it's just too expensive for them to do that for everybody and they have one eye on their budgets.

    To be honest, I'm yet to meet a doctor who will go out of his way to prove to me that what I think I have is wrong. The one's I've had the misfortune to be treated by have behaved as if Ive got three heads or speaking in tongues. Somehow, it always feels like it's down to Me to Prove I Have got what I feel I have which can be virtually impossible without the raft of tests needed. A Catch 22!

  • It doesn't even matter if the tests show it or not. You are seriously ill if your brain is getting that message. Something is wrong and it needs to be looked at more closely. My doctors made me sit around waiting until the problem got so big that I needed help with the worlds best specialist. They kept saying yeah we know something is wrong but we don't know how to address it.. So much could have been avoided if they had only listened to me when I told them all that it was much more serious than they knew. One full year I was passed from specialist to specialist in my area who were not sure what to do... all of that precious time, I had nerves dying on me.. exactly where I told them it hurt a 10 on a scale of 0-10. I thought that I had more pain than anyone else that I ever talked to except one person and I was right.. I had empty nerve strands on the biopsy meaning total death of the nerve axons.. Now I have to do Chemo to stop it... that's a little drastic -- I just had a surgery to try to save the nerves that I have now. I would not have had to go through either treatments if only my doctors had sent me to Mayo Clinic a year or more ago when I was crying to the doctors.

    Be persistent.. if it hurts in the same spot for some time, there is probably something wrong. The body can lie to the brain but 9/10 times there is seriously something wrong if it hurts in one spot constantly or you just don't feel well.. Good Luck Honey.. I hope for you.

  • Doctorsare no longr Gods. They can and do make mistakes. You either need a new doctor or, if she is prepared to accept it, take her documentation to prove you are right. If she argues with it again, then you have to change doctors.

    Good Luck

  • Hello Astitchintime, there are a couple of issues in your post. Firstly proper treatment to fix the problem is not always possible. But many symptoms can be treated to make you feel better, sometimes you have to be assertive. I understand what you are saying it took me years of fighting to get the doctors to agree I have illness that benefits from certain treatment and will not be getting better. Many illnesses manifest differently in different people, plus peoples pain tolerance is varied. Some quite minor things can cause severe pain and some things like certain cancers cause no pain. Pain is a sign of something not working right in your body so it needs investigation , however it seems these days many things are left to mother nature to mend for want of a better solution. As you see from the replies you are not alone in being dismissed with poor excuses, or left with the feeling they think you are Hypochondriac or suffering emotional illness. Try another doctor if that is possible.

  • Because I know 95% of the Medical Profession have never heard of my condition I sent a Professor at Leicester a dozen international papers on it before my appointment. His first words to me on entering his office were you know more about this than I ever will. 45 mins later and despite telling him I had been diagnosed by 2 specialists from different hospitals he told me I don't have CRPS

  • Lost faith in the NHS

  • I have had this for almost as long as I have lived. I began to learn medicine as I thought if I can't get them to understand me I would learn it. Got my PhD at 60. It is a bind though. Learn as much as you can about your condition and this site is really good for that. See what is best for you and try andhelp yourself in that way. Sending love and plenty of hugs .

  • Hello, Yes I do try and find out as much as I can to help myself. I do look at articles etc on other issues as and when the mood takes me. I have a Degree in the Arts and Humanities. I like information in general. I hope to consider others as I want to be considered. I arrive at the conclusion that doctors can be very prejudiced and cruel by deciding that there is nothing much wrong with you when you have been very poorly, and are determined to do nothing. What they want to do is wind you up when you are at your most vulnerable. ~Timewasters. I wish there was some redress to their insults and neglect etc. I have read that it is best to take a friend with you to the interviews. This is not possible, however. Life is not that simple.

  • I really agree with you. For 50 years I was told there was nothing wrong [I got repeated jaundice plus other things]. In 1994 I found out it was coeliac disease and allergy to lactose and milk fat. My body does not digest fat...or not much of it. I already had allergies [widest use of the word] to alcohol, sugar's and herbs and spices. Last year they found Oral Allergy Syndrome and I was taken off most fruits and carrots. Plus soya that gave me an reaction like a TIA. Still not sure and no tests came out positive. What of now at long last my GP has admitted I do have allergies. BUT then last year took me off coeliac foods after 22 years of having them. I get all my stuff at Amazon now. I cannot even have arthritis drugs and have RA, OA and osteoporosis. They will not believe me and hate me for having got medical quals. Tough. I teach complementary medicine now and Tai chi that is my love. I am now 72. eating the wrong foods causes my BP to rise and I can't have any medication for that either. They make it worse as the body reacts.

    I feel it best to be in control as far as one can and to always help oneself if possible. It isn't always possible but at least understand. My motto is Education not medication. This does not suit everyone I accept that. It is mine.

  • When I saw the headline I though oh no

  • Budget is a very important issue, usually people don't take notice of their disease just because of this issue, its not good because nothing is important than your precious health...

  • When it costs £60 to get to Accident and Emergency and they send you home not doing anything then weighing up the financial costs needs considering. When something is important to you and it is a dire situation, and when the medical profession just say go and talk to some one then where does the answer lie? Where does the answer lie when you need surgery? You wait and wait and keep waiting, and wait. Desperate.

  • The nhs in many ways is marvellous. However from what I am suffering from and not knowing what if anything is going to happen it is no picnic. Why are people like me being neglected?

  • my daughter went to a& e with severe stomach pain and was told by the doctor there to go back to her GP as he could not justify doing any tests out of his budget, I ended up scraping the money together for her to be seen private, we still no better off as yet 12 mths down the line.

    Sheryl

  • I don't think so it usually happens, however sometimes they miss diagnosis when the disease is weird or uncommon but its chances are very low. Meanwhile there must be a condition that your doctor must be qualified and skillful. orthopedicsurgerysandiego.com/

  • Change drs, write to the practice manager or PALS to complain about the mistreatment you have recieved..

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