rose & everyone & dr patient relationships & trust

[Guest guest]

Dear Rose & All, Reading through your reply to Jeannie has made me realize why it is so hard for me to turn my full faith and trust over to my Dr.s (whether I am here in Kuwait or in the U.S. or anywhere else), why I am also questioning their decisions, reading up on their decisions, on the meds, on the tests, trying so desperately to learn what I can about everything and stressing so much over it all. Why I can't be like other patients who have the ability to trust in the Dr.s decisions and advice. I use to have that ability, I was not always like this. I used to listen to the Dr and take my meds, walk away believing what they said whole heartedly. But what you say below about being told for 5 years there was nothing wrong with you, despite going to your family Dr who knew you well

Im sure, is quite similiar to the way I became so leary of Drs now. Like so many , probably all the members of this group, I saw Drs for things that were signs that something was seriously , seriously wrong for at least the two and half years prior to my diagnosis. They all told me i was working too hard and stressed. At one point I had severe, I mean severe I tell you,ankle pain and pain on the bottom of my feet, it was an isolated symptom i think, who knows, it was so severe i literally couldnt move or once i was up for a period of time i wouldnt dare think to sit back down the pain would get so unbearable. That d------- dr told me it was my weight!!! my wieght was 150 pounds at the time and i am 5' 5' now granted, i needed to lose a little weight, but i wasnt obese. she was about 40 pounds more than me , i remember telling her she was substantially heavier than me, did she have such horrid pain? she

actually said to me that each body had its limits. i just left. that was about three and half years or little more before my dx. gosh i remember that severe pain, it would come and go, stay for weeks then just disappear for long periods of time. it was excruciating. sometimes i go over the two years before dx as things got worse, the times i couldnt stand up straight, and the d---- ent just shrugging his shoulders at me.... telling me to get some rest. when i was so screwed up and the first times having colustrum when i wasnt nursing or having a pregnancy, but missing periods and so messed up, something was wrong i knew it..... i said maybe i was in menapause early?? the gynocologyst said hwo old are you?? early 30's? it cant

be...... you are tired , you are working hard, get some rest....... i couldnt breath, i was exhausted, i hurt everywhere, something was wrong, i thought maybe diabetes..... they ran the tests for me.... all normal. they said no you are tired get some rest.... no one ever added all these visits up, until when? until i literally showed up unable to walk, stand, having severe neurologic deficits and disease. i remember this appt clearly with this dr, who said you were here a year ago, and yes you have been in the clinic to many specialists over the past two years complaining of the same things .... and then had the nerve to tell me after their exams over those few days he thought i had progressive degenerative neuro muscular disease and it was urgent i get out of the

country for evaluation. but i believed them. i believed all these drs who said i was just stressed and tired and neded rest. i didnt really question them to be honest with you. and there are many many many more examples i could tell you of specific things overlooked before my dx. specific things crying out AUTOIMMUNE DISEASE IDIOT!!!!!! and over and over i hear stories the saem from one after the other of you ...... so its such a dilemna... the question of the day is this.. how do we get over this and learn to retrust our physicians? because we must. at the point of illness when we can not understand the tests and all they mean. when we are incapable of making

decisions for ourselves, because we are simply to exhuasted or to sick, or do not understand it all etc, we have to be able to let go and trust that our physicans know best and are in fact not idiots and are doing thier best for us, we have to believe in this, in our hearts, we have to feel safe in it. that they are looking out for us. but how do we? when its our lives or daily functioning or cognitive abilities etc that are in their hands, when it is honestly at hat level? not just an annoying cough anymore, or a small pain in the left pinky, but debilitating pain that will turn crippling if not stopped in its tracks perhaps, or a cough that will maybe lead to permenant lung damage. you get the point. how do we stop punishing our current drs for past drs failures, while still being

intelligent consumers of health care and protecting our rights? how do you ensure you are getting the best care without annoying the crap out of your dr, especially when you are dealing with an illness they do not know about and already feel inadequate about? how do you educate yourself about lab work and tests when they get to a point that its just not basic enough for you anymore to look it up on the net and get the simple info you need and your dr doesnt want to take the time to explain it to you any longer? or gives you such a trite answer even you have to laugh at it. and how in the world do we get over them having an attitude with us for actually having an attitude with them for treating us the way they do? because they studied medicine and have knowledge we dont, they are what? is that why they became drs? to help people get better, which has

to include sharing their knowledge in simple terms or to hold thier knowledge to themselves and look down upon the people begging for the help? sorry for the ranting, can you tell im feeling resentful? on the behalf of everyone, not just myself, everytime i read a post from one of you having these dx stories i become more and more furious and resentful, at the same time, more and more saddened for everyone. I tried to do some research on the Dr - patient relationship and found an okay link... it was from a lupus site, but it doesnt really answer my questions either. It was a starting point though. take care and dont give up kim ns moderator http://www.mtio.com/lupus/lal_20.htm I wish everyone the best and hold you all in my heart and prayers. Take care, Kim NS Moderator Jeannie, have you been tested for diabetes & hypothyroidism? Those could both cause weight gain. Wouldn't you like to just slap the doctor who tells you to "push through the pain?" This isn't just soreness from being out of shape. My family doctor told me 5 years ago that there wasn't anything wrong with me that an hour on the treadmill every day wouldn't fix! Moron. Unfortunately, most doctors know so little about sarcoidosis that they don't realize that it can affect

every organ & system in your body & that you may have a lot of weird symptoms. I used to feel like I had pieces of tape stuck to the bottom of my feet. At first it was just for a few minutes, in different spots. Eventually I had full-blown neuropathy in both feet, with numbness & severe pain. The tape feeling was the beginning of it. Now I also know that every weird or painful sensation I have is not necessarily sarc-related, but they should all be taken seriously & investigated. Good luck with finding a caring, knowledgeable doctor. Ramblin' Rose Moderator

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