Jump to content

My Experience With A Mayo Doctor -Please Read - Everyone!!!!!!


issie
 Share

Recommended Posts

Wow, I am just so angry reading this, and I'm sorry you had to encounter this person. It reminds me of all the times I was misdiagnosed, and I cannot believe this is still going on today. It is terribly unfair, but I am glad you got your diagnosis and have other competent people to help you. I am not in AZ, but you should post her name, so everyone knows to avoid her. Although, I am not sure if that is allowed. What a shame for anyone who has to go through that again :( Good luck and feel better.... It is terrifying that this is even possible, and that it is being written about as a psych issue. I've been to many a shrink in my day, and none of them thought I was nuts. Just sick. But I share in your frustration.

Link to comment
Share on other sites

Sad. (I know how much you must have had pinned on that appointment.) And, VERY unprofessional and even down right dangerous for any patient, like you, who was NOT experiencing somatization disorder.

My allergist is from Mayo. At the time he did his stint there, they did NOT recognize MCAD. I will say, despite his never giving me the DX, he DID treat me appropriately. I just never got a DX from him. Kind of made it hard for me to explain to other physicians, etc. WHY I was on so many antihistamines all the while- allergic to nothing :rolleyes: I had to go to Brigham & Women's for the official DX. When I shared it with my Mayo-trained allergist, he seemed almost relieved.....like he thought that all along, but wasn't allowed to give the DX.

I know there must be lots of wonderful physicians at Mayo, but we don't seem to get too many good reports here.Sorry that happened, issie. Thank you for the warning- hope it will help others here.

Hugs-

Julie

Link to comment
Share on other sites

I think that neurologist at Mayo has a severe mental disorder.

I just love it.....not.

I mean, take a person whose life is going really well, no problems (let's take me, for instance), and then try to convince me that I ruined my life on purpose! Right! .....Wrong!

Its absolutely unethical to be passing this garbage around.

I know I had to straighten my GP (general practitioner) out, because he was suspecting a mental diagnosis for me. I straightened him out, and now every time I see him, he tests my blood pressures and heartrates, and concludes,"they are all over the place, aren't they?" DUH!!!

These idiots do not deserve the title "Doctor of medicine".

Link to comment
Share on other sites

I wonder how she (this rude lady Neuro) feels when she sees her patients in the patient room on the left just down that Neuro Dept. hallway. Seems I always get that room with my awesome Dr. Goodman appointments....the man is Saintly. On the rack right there in the room are Mayo Clinic written patient booklets on POTS, Orthostatic Intolerance, Dysautonomia and such for you to take home and read. There are employees (techs, docs etc.) who do dysautonomia testing right there on the third floor. It can't be easy nor comfortable to have someone such as the way you describe this lady doctor is - as a co-worker. She sounds like a real pain in the behind for everyone...and unfortunately sounds like she's used the powers of persuasion and other tactics to get others on her "you are mental if you think you have Pots" bandwagon. The way all Mayo staff can read each others notes and charting by a simple click on the computer ~ must be pretty interesting at times lol... I mean these docs (like Goodman) that help POTS people are spending their one-only precious life helping a very vulnerable patient population and they do research and write papers - every bit as much as this woman who says its all in your head! On Guard!

Is there a link to the article on Conversion Disorder and Somatization for us to all read what you are privvy to Issie? In seeking diagnosis and helps for EDS (and the pots-like stuff) I've heard personally from the geneticist physicians (our nations very best EDS docs) how very frustrated and angry it makes them to hear time and time again how patients are told 'it's all in your head' 'it's psychological' 'you are a hypochondriac with anxiety and depression' In fact even in one of their write-ups on my own case they 'teach' the primary doctors in their dictation by sharing with them that many a patient has been wrongly diagnosed prior to getting the correct diagnosis (with anxiety, depression, emotional issues, poor mental health). I applaud them in doing that - it's healing for the patient to be validated and it hopefully teaches if not frankly shames the docs that don't approach the difficult or complicated symptoms of patients with humility and respect for the patient and the difficult nature of them seeking answers (while feeling dreadful to boot).

Thanks for sharing Issie and let us read this article/paper!

Link to comment
Share on other sites

I also suspect that because of the emotional trauma of bad doctor's appointments, many of us minimize or don't discuss some types of symptoms, which is a shame as it limits the knowledge that could be gained about our condition. For instance, when I was really sick I got major symptom exacerbations from even relatively mild sensory stimulation, and even now strong emotional reactions cause symptom exacerbations for me...but I don't feel like there's any point in talking to doctors about this, because it sounds so strange and I don't want to risk anyone thinking I'm nuts. The sympathetic nervous system is an interface between our bodies and environments, and a lot could probably be learned about the physiological effects of stress if we were dealing with knowledgeable, open-minded caregivers.

Given how unpredictable and awful our symptoms can be, I think they should look at why we are tough enough not to have been driven crazy by this, rather than the opposite.

Link to comment
Share on other sites

I am not in AZ, but you should post her name, so everyone knows to avoid her. Although, I am not sure if that is allowed.

Tia,

I can't post her name, we can post experiences that are good with doctors names - but if anyone wants to know - PM me.

Issie

Link to comment
Share on other sites

I also suspect that because of the emotional trauma of bad doctor's appointments, many of us minimize or don't discuss some types of symptoms, which is a shame as it limits the knowledge that could be gained about our condition. For instance, when I was really sick I got major symptom exacerbations from even relatively mild sensory stimulation, and even now strong emotional reactions cause symptom exacerbations for me...but I don't feel like there's any point in talking to doctors about this, because it sounds so strange and I don't want to risk anyone thinking I'm nuts. The sympathetic nervous system is an interface between our bodies and environments, and a lot could probably be learned about the physiological effects of stress if we were dealing with knowledgeable, open-minded caregivers.

Given how unpredictable and awful our symptoms can be, I think they should look at why we are tough enough not to have been driven crazy by this, rather than the opposite.

Sarah,

You are so right. My husband has been with me through all these appointments and he knows what I've been through. He also knows how my body acts/reacts and functions. He is real in tune with me and is very supportive. I'm so fortunate!!

I do agree that stress and even being tired will make things worse. But, look at it this way - the autonomic system - RUNS YOUR ENTIRE BODY. So, if there is a dysfunction there - who knows what all will be affected. It can affect every organ and function in your body. So, of course, everyone can and does react differently and the symptoms can be so varied and complex. It's one of those very difficult and hard to handle problems. And, because it is considered a rare disorder - few doctors even know about it. They don't want to take the time to educate themselves about it - what's the chance of having another rare case in their life time. I'm so glad the specialist in POTS came back to Mayo and maybe people will get him there and not the one I had.

Issie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...