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Dueling Doctors - And The One I Trusted The Most Is Treating Me Like Crap


heathmcev

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I am having an horrible time! My main POTS dr (autonomic neuro) called and yelled at me on the phone Friday! I have basically been in tears since. I had left a message with his assistant, letting him know that my cardio wants to switch up the meds, and to call me if he has a problem with any of it. He and this cardio had agreed to work together in my treatment, as both have been treating POTS for 20-some years (sounds ideal, right?). So he calls me and says angrily that he "doesn't have time to argue with another doctor". They've never even spoken!! Nor did I ask anyone to "argue" - I was trying to do my due diligence and make sure everyone was on board with the change. I didn't want to upset the apple cart... well the apples are rolling around in the street now! He said he also got denial from my insurance to have the insulin response test done that he wants me to have. Shouldn't a Dr know that (1) that's sort of par for the course w/ insurance, and (2) that it's NOT the patient's fault???? Plus, I went out of my way to do as much leg-work for him as possible in trying to get the test approved so as no to waste his time. To the point where the insurance company actually said to me that I had to let the Dr's office do the rest. GRRRRRR!!!! So did all this require yelling?? Sort of ironic when he's the one who's been lecturing me on not getting stressed out since it worsens symptoms. Now he's causing the stress.

I have been vacillating between anxious energy and bawling all weekend. I'm trying to get angry but it's hard. I can't imagine why he needed to take things out on me. I actually broke down and cried while on the phone with him, which I've never done w/ a Dr before. But then I've never been treated this way! And the worst part is that he's the one who I've felt best about through this whole thing. He's the major POTS Dr in the area and up until this moment I felt like we'd been getting along well and that he's really been helping. It's clear, though, that even though he said he is willing to work with my POTS EP, he really wants to run the show himself. But he's not a cardio, just as the cardio's not a neuro! Forget what's best for the patient. In fact, as proof of the point, he had me go through a horrible withdrawal from Cymbalta just to prove whether or not the cymbalta was exacerbating my palps... and after a month of withdrawal symptoms, the tachycardia and palps were the same as ever. The cardio told me later that he could have said straight off that the cymbalta wasn't effecting the palps. I never even told the neuro this because I didn't want to seem to be second-guessing his expertise. Now I have seen first hand that it's good I didn't tell him this... God forbid his wisdom be questioned!

so now I'm wondering what the heck to do. Part of me thinks I should suck it up and keep going to him, but the rest of me wants to try another POTS guy in a neighboring state (Dr Goodkin - I think he's in Media, PA? If any of you like him and think I should give him a try, please pm me!). I feel like the rug's been pulled out from under me.

*sigh*

dizzyde

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just wanted to say i know exactly how you feel.

i was seen by a doc in may, he was very helpful at the time, thought that i had p.o.t.s, which i do, sent me to another neuro for tests, which confirmed p.o.t.s

i have had two appointments since then, one with another doc in his office, then the last appointment with him, he said that i should be improving more than i am, that by next april my bp should be in line, my hr will be normal and i will be fine. i didnt understand this at all. i still have all the other symptoms.

also the other neuro said i could have hypermobility, when i mentioned this to him, he straight away dismissed this, my stomach sunk, i thought that there must be something else wrong with me. when i said that i could put both feet behind my head still at the age of 35 he said perhaps i have hypermobility. make your mind up doc!!!

i came out of the office upset, i didnt cry infront of him, i wasnt going to give him the satisfaction. now i know that i have to take some degree of control, try to figure out whats best for me. and override these docs.

some docs have big egos. i need to grow a thick skin!

your just trying to do whats best for you, dont listen, and follow what you think is right for you.

good luck

emma.

xxx

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Guest tearose

You have reached an important turning point with this pots doc. I suggest you go and speak with him at the end of a day. Tell him exactly what you said here and let him know that you are willing to work past this with him if he "understands" what he put you through and is willing to put things on a better track with you. IF this doc is really worth working with, he will either apologize, explain why he was so flip with you, or just work things through to the point where you will have confidence in him again and he will again treat you with simple kindness and respect.

On the other hand, if he is not interested in getting through this, then you should clearly have no question that leaving his care is the correct thing for you to do.

When I have had a physician for many years and he demonstrates a real bad decision or lack of proper care I first try to work it out. Even the best doctors have really horrible moments in their practice and it is indeed the rare but special professional that can work past this and then that doctor is a rare gem worth keeping!

When in doubt...trust your inner voice/instinct.

tearose

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I feel for you. I eventually was abandoned by my POTS docs- all three of them.

I had a flare up last week. I had to be WHEELED to the GP surgery because I couldn't walk. I had gone blue in the street, slurred, and collapsed. I went in to see him. I spent 40 minutes talking to him. He didn'ttake my pulse. My bp. Or anything.

his grand conclusion? "You're tired, it's been a long term. Go home and relax. Do nothing for a bit, be a teenager."

This is a GP I would trust with my life. I am not taking it personally. No one is perfect. I've learned not to put my absolute faith in *any* Doctor, but rather in my own resilience.

It's the only way not to end up getting that horrible sense of violation when a Doc screws up- and they do, quite often. Some more often than others.

I would try and speak to the other Doc from th eneighbouring state- even if this jerk apologises, you won't feel the same about him, plus you may feel resentful about not being able to tell him exactly how rubbish he made you feel.

Take back the power and things will get better.

Hugs.

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I'm so sorry you had to go through that.

My only suggestions is pretty much along what Tearose said. Remind your primary that he had agreed to work with this cardio.

Did you, or are you going to, tell your cardio about your neuro's response?

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I havew a great EP...but I had to go thru a couple of them before I found a good one.

Although I think we need to be mindful that doctors are sometimes overwhelmed. Perhpas he was really having a bad day. I would probably try to talk with him again. Then if I didn't get a good feeling I would move on and fast. BUT try not to let him upset you...mostly becasue you are the one who pays the price!!

Good luck.

Erika

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It's amazing how much of a weight I feel has lifted in just talking with you all :) thanks.

tearose & persephone - what wisdom. you are absolutely right. trying to get up the nerve to call him is tough. I'm afraid he'll act the same way - but if he does at least I'll have my answer and can move on to find another doc. I'll just have to steel myself. I used to be have such a fighting spirit, but some days it's hard to find my 'fight'.

KeXia - I'm planning on calling the cardio tomorrow to let him know what happened. He has a big ol' ego too, but at least states quite honestly what is and isn't "in his jurisdiction", which I respect. He's been sending his notes to the neuro even tho he hasn't gotten any in return.

erica - my mom had the same thought (after she got past wanting to call him herself to bawl him out) :D - that the doc was having a bad day and i got the brunt of it at 5p on friday of what may have been a long week. and i understand that - we all have crap weeks. but as you say, i'm the client. it's really hard to remember that and hold them to it sometimes.

i still am not sure how exactly to approach the doc about all of this. he made me feel like i was such a strain on his time just in our short conversation last friday that i feel like i'm just a pain in the *** if i have to call for anything now - even to discuss what happened. i think he started to feel a slight twinge of guilt towards to end cause he started offering to get my records to the cardio, but it was all abrupt and i was clearly in pieces by that point.

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If you can't get up the nerve to call him, then fax him. It is far less heated anyway. It gives you the weekend to work-out exactly what you want to ask and tell him. Tell him how you felt after his call, and what you were trying to achieve with your initial questions. Sometimes, words on paper are easier to read than to hear and carry more weight. Don't accuse him of being nasty and keep it from your perspective. In the letter, you can also request an appointment with him to discuss it, since he has been the doctor you have trusted the longest.

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Ooh... I like that approach, firewatcher. I am one who avoids confrontation at any cost, so to really be able to plot out my words carefully on paper is less intimidating - not to mention avoids me having to worry about his immediate reaction. Also places the ball squarely in his court. Thx :D

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The advice you have received is blessed, I could add nothing of value to practical next steps. What I can share with you is some philosophical spin stories which may help ease the "personal" pain and confusion you are grappling with.

Each of us in our journey seem to walk a path that feels at times very alone and confusing. However sometimes when we are lucky we get to see the larger tapestry that is being woven and how our one small thread fits in perfectly into the overall design of the masterpiece.

A little while back I had an "unfortunate" run in with a highly esteemed medical specialist -- we'll call him Dr Ego. Like you, I could not imagine why Dr. Ego spoke to me in the tone he did. The effort it had taken for me to even get to his office that day was herioc and as I tried to fathom -- why? why did this happen to me? I was able to look back and see some of the pieces that were not evident to me in my own exaserbation.

While I was there and flaring badly ... two of the nurses had brought me back to a room to see if they could help. This was a big conglomerate office with lots of different nurses assigned to different Doctors. One nurse said to the other ... "Do you want to check her blood pressure?" then she seemed to catch herself and followed quickly with ... "Oh, I forgot! You are Dr. Ego's nurse, he doesn't let ANYONE take blood pressure on his patients." Then she laughed and cuffed me with the blood pressure device on the wall herself. Dr. Ego's nurse wasn't laughing.

I waited a full on hour before the doctor came in to see me -- even though I had been through a horrendous POTS episode in his waiting room and the nurse had said he'd be right in. I'm not sure he even checked my vitals before writing me a script for a beta-blocker (which my cardiologist wouldn't have approved of) and sent me on my way.

I was just happy to be released out back to my GP who I could trust to handle things in a professional and thorough manner, and my cardiologist who later helped me better understand the hyperadrenergic aspects of the POTS flair. But as I 'dashed' out of there ... Dr. Ego's nurse followed me into the parking lot. She wanted to know what he said to me, she wanted to know how I was treated. I could tell in her eyes that she was questioning her own choices and if serving the most prestigious specialist in town was in line with her own values.

I'll never know ofcourse how my experience impacted her life choices ... but I did walk away knowing it wasn't about ME. I was just one piece of a jigsaw puzzle that brought certain people and circumstances together in order to complete one small section of the board.

We can't always see how the other actors and stage hands in this big story of our life seem to fit together ... but when we get a sense that they always do ... we can take a deep breath of relief in knowing there was nothing 'personal' about a particular encounter.

Good luck on your next step of your adventure. I do hope this story has a happy ending.

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I am having an horrible time! My main POTS dr (autonomic neuro) called and yelled at me on the phone Friday! I have basically been in tears since. I had left a message with his assistant, letting him know that my cardio wants to switch up the meds, and to call me if he has a problem with any of it. He and this cardio had agreed to work together in my treatment, as both have been treating POTS for 20-some years (sounds ideal, right?). So he calls me and says angrily that he "doesn't have time to argue with another doctor". They've never even spoken!! Nor did I ask anyone to "argue" - I was trying to do my due diligence and make sure everyone was on board with the change. I didn't want to upset the apple cart... well the apples are rolling around in the street now! He said he also got denial from my insurance to have the insulin response test done that he wants me to have. Shouldn't a Dr know that (1) that's sort of par for the course w/ insurance, and (2) that it's NOT the patient's fault???? Plus, I went out of my way to do as much leg-work for him as possible in trying to get the test approved so as no to waste his time. To the point where the insurance company actually said to me that I had to let the Dr's office do the rest. GRRRRRR!!!! So did all this require yelling?? Sort of ironic when he's the one who's been lecturing me on not getting stressed out since it worsens symptoms. Now he's causing the stress.

I have been vacillating between anxious energy and bawling all weekend. I'm trying to get angry but it's hard. I can't imagine why he needed to take things out on me. I actually broke down and cried while on the phone with him, which I've never done w/ a Dr before. But then I've never been treated this way! And the worst part is that he's the one who I've felt best about through this whole thing. He's the major POTS Dr in the area and up until this moment I felt like we'd been getting along well and that he's really been helping. It's clear, though, that even though he said he is willing to work with my POTS EP, he really wants to run the show himself. But he's not a cardio, just as the cardio's not a neuro! Forget what's best for the patient. In fact, as proof of the point, he had me go through a horrible withdrawal from Cymbalta just to prove whether or not the cymbalta was exacerbating my palps... and after a month of withdrawal symptoms, the tachycardia and palps were the same as ever. The cardio told me later that he could have said straight off that the cymbalta wasn't effecting the palps. I never even told the neuro this because I didn't want to seem to be second-guessing his expertise. Now I have seen first hand that it's good I didn't tell him this... God forbid his wisdom be questioned!

so now I'm wondering what the heck to do. Part of me thinks I should suck it up and keep going to him, but the rest of me wants to try another POTS guy in a neighboring state (Dr Goodkin - I think he's in Media, PA? If any of you like him and think I should give him a try, please pm me!). I feel like the rug's been pulled out from under me.

*sigh*

dizzyde

I don't really have anything else to say as everyone has already said it. BUT I did want to say, I've heard many times Dr. Goodkin is excellent.

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Thank you everyone for your wonderful responses... I feel so much better just having the support of people who understand where I am coming from! I feel very fortunate to have this sounding board & support system.

Peaceful, Healthy Holidays to you all!!

~dizz

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I've had a couple bad experiences with doctors. I wrote them a letter in each case not knowing whether they would actually read it. One I got a phone call from the head of the clinic who apologized and was wanting to know how she could Help. (I think it was a cover their tail call because I think there was a big HIPAA violation in there.) Another the doctor read because when I saw him again when he was on call to do my hospital discharge he walked in and said "I guess I'm the last person you want to see right now." I got my point across! I'm such a non confrontational person that I just would have broken down and cried. After I sent in my letters I felt better and moved on the the next doctor. I pay them a lot of money and it's not to be treated like crap. I go the them for help. If they are too busy I'll find someone else!! I'm now driving a lot further to see a doctor but if I need something they are there for me!

Good luck!!!

Brye

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