Really need you guys opinion re: upsetting doctor situation!!!

[Clodomir]

@Gingergrrl43

Hi,

I have different doctors for different things: ophthalmologist, gynecologist, otorynolingologist, etc...I, always, say to her/him (the first time I met them) that I have Lyme disease, but that's all. If they ask me more: what kind of analysis, tests, etc... I always say: "I don't really know but I have a specialist who take care of me for that problem" If they want to know who it is, I don't answer because I know that the reaction would be : "not a good one, don't know him, you have to change, etc..." so I say that I forget his name due to memory problems, etc... and I come to the point: my ears, my eyes, etc...
Everything is separate. It is a good thing, I think.

I wish you all the best.

clodomir

 

[Gingergrrl]

Thanks to all for your additional insight. I haven't really slept in two nights so hoping my response is coherent!

@NK17 I agree with you that my focus is on Dr K and OMI and I am not letting this derail me from that goal. It was just very disappointing and I felt blindsided by her reaction and still trying to figure out if I did something wrong.

@Valentijn I don't think she would say anything to harm me in the disability papers b/c she knows how ill I am. I don't think she is a hateful person or toxic to that level. This is still short term disability through my employer and in Aug it switches to a long term case and I will have Dr K do those forms but at present she is my treating doc (along w/endocrinologist) so I need her to do them.

@Clodomir I also have separate docs like you mentioned so when I see optometrist, obgyn, etc, that is totally separate and I am not talking about CFS. My ND was the one Dr who integrated everything together and did the things that I'd always imagined a real PCP would do so she knew about all my other docs, all prescriptions, etc.

 

[Gingergrrl]

Just wanted to give a quick update b/c it often helps me to write things down. I saw my cardiologist this morning and it was a further reality check of how inappropriate my ND's behavior was at our appt. My cardiologist was so happy that I went to OMI and said she was so impressed with my level of "Self-motivation" to do everything I can to get better in spite of how sick I am feeling.

We talked about my Atenolol dosage and she is having me do a consult with another cardiologist who specializes in POTS, OI, and autonomic stuff at the end of Aug. He is not familiar with CFS per se but if he can help me manage some of the symptoms, I am all for it. She was so appreciative that I had made her a copy of the tests done at OMI and when I told her how Dr. K re-named CFS as "Viral re-activation disease due to immune impairment" she agreed and actually wrote that title in my chart!

We also spoke about the 2-day CPET test (b/c she had mentioned doing the one day stress test in her office) but when I explained why 2-day CPET captures PEM and used for disability, she fully agreed that if I were to do any test, it should be that one but also felt that I am too ill right now to do it (which I agree.)

She asked me to fax her the results that I will get from OMI on Mon and was proud of my efforts and felt the info will help her with future CFS patients. It was the polar opposite of my experience with my ND, which was a good reality check b/c I was starting to doubt myself!

Thanks again to everyone who gave me feedback in this thread earlier in the week!

 

[Tired of being sick]

@Dreambirdie You are correct and very wise. I will give the whole thing a rest and it is not a crisis like you said. It is good to remind myself of this sometimes.

This is super true in my case.......

I get bent out of shape very quickly when a doctor visit does not go the way I've planned

And I'm toooo damn ignorant to realize that no doctor visit goes the way I plan,SAD.........

 

[Tired of being sick]

Also I don't know about you but when I get bent out of shape,the Dr. starts to believe that my mental health is the problem..

He or She does not tell me this to my face..
But I can clearly see it in their eyes........

 

[Gingergrrl]

This is super true in my case.......

I get bent out of shape very quickly when a doctor visit does not go the way I've planned

And I'm toooo damn ignorant to realize that no doctor visit goes the way I plan,SAD.........

@Tired of being sick Don't be too hard on yourself and I've now learned that no doctor visit ever goes according to my plan. I just try to remember that there are good and bad doctors just like in any other profession and to try to trust my instincts as best as I can. I know it is hard but don't give up!

 

[taniaaust1]

I didn't feel like the email was the issue she reacted to (and I did not make a big deal of it w/her.) She reacted when she saw what I had been tested for and got really defensive and critical both of me and of another Dr who she doesn't even know.

The weird thing is that she knew I was going up to OMI (it was not a secret) and she sent Dr. K a summary of her treatment with me and seemed happy to do so. She had seemed excited that I was going and expressed wanting to consult with him in the future to learn more about his approach to CFS. That is why her reaction today was so surprising to me.

To me that all sounds like when she saw those tests, she realised she should of actualy done them herself and that upset her. Obviously she's a person with an ego issue who finds self blame hard and hence then goes and projects her upset feelings onto another. (maybe she had PMS that day too???, its always a possibly seeing this was so out of character for her).

I suggest to stick with her while you are getting disability stuff sorted out, a bad time to loose a doctor.

If it was me, I wouldnt be bringing up the issue your next appointent as it will probably just send her on the defensive again if she cant handle things she sees as her own mistakes. Maybe thou she will bring it up and appologise once she's had time to think. (I dont think you should owe her an appology, her behaviour was bad). Its worth going back, she may well surprise you with an appology if you dont upset her.
..............

I have two doctors I need to take great care not to upset, one as he has a huge ego and likes to feel in complete power during my appointments and gets cranky very easily (he doesnt even let me speak much of the time! His nurse last appointment had to step in to support what I was trying to tell him). He used to be a very nice dr but with old age, he's changed.

The other also with an ego, loves lecture in a not nice way (he's so hard and cold and doesnt listen well either), he has no good patient manner (Im sure this dr has Aspergers). These doctors thou are medically the very best I can get (took me over 10 years to find these, all the others were medically incompentent as far as ME/CFS goes), so I have to put up with these bad doctor attitudes (neither has lied to me thou).

Its very hard to find good doctors.

 

[taniaaust1]

My integrative doctor invited me to email her too but I never did. I decided I didn't want to bother her any more than I had to with my health problems. I was just happy that she took me as a patient and tried to help me. Most people are too lazy to take on a challenge nowadays.

About 9 years ago I had 26 diagnosises on a form for some lab work. The lab tech wasn't happy to see this.

Recently I was told that my list of diagnosises is 2 pages long.
And this list would be normal for an 80 year old. I'm 58.

Am I the only pwc who feels like a pita ? X

I used to say I felt like a medical pizza due to all my medical issues.

 

[taniaaust1]

I can understand and forgive an ego problem, if the doctor can get over it.

But once a doctor had lied to me, that would be it. That's the part I found most disturbing: that she was willing to lie to protect her ego. If she did it to your face, she'll do it to her colleagues, to your other doctors, in your medical notes, and to the disability reviewers.

It might not be deliberate - maybe she lied to herself first, and believed what she was saying. But it still makes her untrustworthy, and she's in a position to cause a lot of damage.

The lying is the part which disturbs me the most with a doctor and I would get rid of any doctor who's done that as soon as I sensibly can do. If they are going to lie to you, you cant trust in what they are saying when they are dealing with others to do with you.

I had a doctor who I had for 2-3 years who "pretended" ME/CFS was a real disease while he just really believed it was a mental health illness so he was ignoring following up with me at all what my other specialists were telling him to do for me in thier letters and phone calls (and I didnt know this was going on for soo long).

 

[Gingergrrl]

The lying is the part which disturbs me the most with a doctor and I would get rid of any doctor who's done that as soon as I sensibly can do. If they are going to lie to you, you cant trust in what they are saying when they are dealing with others to do with you.

I had a doctor who I had for 2-3 years who "pretended" ME/CFS was a real disease while he just really believed it was a mental health illness so he was ignoring following up with me at all what my other specialists were telling him to do for me in thier letters and phone calls (and I didnt know this was going on for soo long).

@taniaaust1 Thanks for your feedback and I am still trying to sort out in my head if she knew she was lying to me or actually believed what she was saying (either way it is still bad!) She definitely believes in CFS and believes that I have it and was initially (and for a long time) the most helpful doctor I had seen. She made me aware of chronic viral re-activation of EBV and did test me for this. She just didn't do all the other tests which she claimed to do and then got angry and accusatory. I know I just need to let it go.

 

[IreneF]

Just wanted to give a quick update b/c it often helps me to write things down. I saw my cardiologist this morning and it was a further reality check of how inappropriate my ND's behavior was at our appt. My cardiologist was so happy that I went to OMI and said she was so impressed with my level of "Self-motivation" to do everything I can to get better in spite of how sick I am feeling.

We talked about my Atenolol dosage and she is having me do a consult with another cardiologist who specializes in POTS, OI, and autonomic stuff at the end of Aug. He is not familiar with CFS per se but if he can help me manage some of the symptoms, I am all for it. She was so appreciative that I had made her a copy of the tests done at OMI and when I told her how Dr. K re-named CFS as "Viral re-activation disease due to immune impairment" she agreed and actually wrote that title in my chart!

We also spoke about the 2-day CPET test (b/c she had mentioned doing the one day stress test in her office) but when I explained why 2-day CPET captures PEM and used for disability, she fully agreed that if I were to do any test, it should be that one but also felt that I am too ill right now to do it (which I agree.)

She asked me to fax her the results that I will get from OMI on Mon and was proud of my efforts and felt the info will help her with future CFS patients. It was the polar opposite of my experience with my ND, which was a good reality check b/c I was starting to doubt myself!

Thanks again to everyone who gave me feedback in this thread earlier in the week!

You sure have a great cardiologist!