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Anyone want to share their experiences with doctor


JLB
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Well, my appointment with the neuro is coming up in a few days, and after all these years of misery - and reading and researching for myself - I'm kind of angry at the medical profession. I know that's not the best attitude to head into a doctor's office with, so I was wondering if anyone here wanted to share their negative experiences with the medical community, and give me pointers on how to cope productively.

I can't believe, as I've looked back on the past 20 years, the really condescending, indifferent, and at times INCOMPETENT medical care I've been exposed to, and I've suffered because of it. I don't want to carry this attitude into my appointment - any suggestions would be very much appreciated.

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I've always found that being less emotional works well with most doctors when in an appointment. I've had my worst experiences when I was seeing a doctor while feeling at my wits end. I was always sent home being told I had an anxiety or other psychological problem. I know this is very hard when you feel angry, frustrated and very sick and exhausted.

Write down your history of symptoms and any blood pressure or heart rate data you have collected on yourself. Try to provide this information as dispassionately as you can.

Ask the doctor to measure your blood pressure and heart rate lying down, sitting and standing.

There is nothing worse for a doctor's ego than questioning their opinion or trying to tell them about an illness they have never heard of. Unfortunately, it gets you nowhere with many doctors. I have had two doctors who were incredibly arrogant and became down-right bull-headed about my condition (insisting I had post partum depression pure and simple and closing their minds to any other possibility) when I asked them to run additional tests or questioned their diagnosis. Only the most competent and confident doctor will be open to your own ideas about what is wrong with you (I have a doctor like that now). So, anything you can do to stroke their ego will only help you, bruising it will be counter-productive.

GOOD LUCK. I know how hard it is.

Katherine

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Hi JLB.

I recently went to a TOP neurologist who refused to hear that there was something wrong and diagnosed me with depression.

This week, I went to a dysautonomia specialist neurologist who immediately diagnosed dysautonomia, POTS, and sleep disorder. I think it has a lot to do with the doc's experience with the illness unless you happen to be blessed with an incredibly open minded physician. Have you checked the website for a doc in your area? Otherwise, you might be banging your head against a wall. I wish the best for you.

Ann

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JLB, Before you made the appointment with this neurologist, did you ask his receptionist if he treats patients with, say neurally mediated hypotension, or neurocardiogenic syncope, or whatever dysautonomia you wish to ask about? I've found that if you ask this BEFORE you make the appointment, you at least have an idea of what the doctor has seen before in his practice. If the receptionist then says, "yes", you can say (if it is true) that you do not have a diagnosis for sure yet but are seeing him to help get a diagnosis. In some cases, the receptionist or doctor will tell you ahead of time that they do not deal with "whatever" you said, in which case you ask, "Can you refer me to someone who DOES deal with these issues? Thank you."

It is helpful to bring to the doctor's appointment a written list of the prescriptions you are taking, the dose, what they are for and who prescribed them, a list of medicines you have tried but that do not work for you, and list of questions you may have that you would like to try and get answers to. (You may want to have a copy so you can give him one, while you are referring to your own copy.) You also want to give him a summary of your current condition including blood pressure/HR readings you may have taken, the day/time you took the readings, and what symptoms you were experiencing. You can then give your notes to the doctor who can then put them in your chart. And, most of all, what symptom or what question is THE most important one for you to try and find an answer to because the doctor cannot do everything and YOU have to decide what YOU want out of the visit. I find that the more you put into your visit by preparing ahead of time, the more you will get out of it, and the more seriously the doctor will view you and your wish to get better. They are more willing to work with you if you have shown how serious you are about getting help. When I've come into the doctor's office prepared as I've stated above, I've always been taken seriously.

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Hey, nantynannie - Unfortunately, there doesn't seem to be any top-of-the-line MDs in this area who are POTS specialists, but the one I'm going to (answering futurehope here) has experience in ANS dysfunction, and his staff said he's treated POTS/Vagus nerve conditions, etc., with some success.

Of course, we didn't find this doctor until we tried it the way you suggested there... :)

Excellent suggestions about being prepared, and I thank you. I most definitely will be doing that. What I really want from the neuro is a diagnosis.

Thanks again, everyone. I'll be sure to report how it goes.

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After 22+ doctors and getting nowhere except "I don't know what else to do" (at least they were honest!) or "your tests are all fine - you really need to see a psychiatrist" (a bunch of BS and a huge cop-out), I GAVE UP on the medical world. It was THE very best thing I could have ever done.

I will go to them for tests, then get a copy of the results and any records in my file, then do my own research. And you know what? I am leading very close to a normal life again! Once I stopped relying on them for prescription treatments and I stopped believing everything they told me, I GOT BETTER! No. not cured, but my symptoms are now much fewer and much less intense - and that is after being very close to bedridden and after much serious consideration of disability.

Everything I do now is based first on nutrition, then professional-grade, whole food supplements. I have received great benefit recently from enrolling in the Metabolic Typing Program, but even before that, changing my diet and taking the correct supplements for my body has absolutely been the way to go.

So, my suggestion is to go for the tests, get copies of everything from every doctor you have visited, and start working on the puzzle yourself - paying particular attention to vitamin and mineral imbalances that can cause your symptoms. Don't just jump into whatever poisons (more commonly known as prescriptions) they are recommending. If I had been following their advice, I would now be taking at least 6 different prescriptions and dealing with unknown side effects caused by them individually as well as cumulatively. I would not feel much better than I did at my worst (probably no better, and in fact, most likely worse) and I would be caught in a world of drug dependencies.

It's hard work, but wouldn't it be worth hard work to feel so much better? Too many insist on taking the "easy" route of popping prescription pills for something the medical world has yet to figure out. That is not a cure, and you are endlessly treating symptoms instead of causes. Nutrition actually treats the causes and then the treatment is only temporary until the imbalances can be corrected - unlike the lifelong sentence of drugs meant only to treat symptoms, not causes.

Remember, nobody but you is ultimately responsible for your own health. Ask for help as much as you need, but don't ever give your power away by blindly following the medical world!

Good luck!

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Our Daughter's Doctor was a cronic disease specialist and diagnosed her CMV 4 years ago and after 1 full year told us that the virus was gone.

She still felt weak and dizzy at times and still missed a lot of school for the next year and a half. We ended up at Children's Hospital in DC. Here they knew about POTS and did a TTT and did diagnose the POTS in December of '03. We stayed with Children's Hospital for 3 months and the POTS just was VERY BAD.

Then we found Dr Abdallah in Virginia (DC Area). Since then, things have improved. He is the only Doctor that our Daughter likes and will trust. She will talk to him and he will listen.

Then there are the ER doctors and EMT's. They have seen us numerous times over the past 22 months, and recognize us and know our daughter's name. BUT still these Doctor's don't know any thing about POTS or how to treat it. What they have learned is that in the middle of the night, we will show up, they will give her 2-3 liters of IV solution with pain medication and she will sometimes be able to walk out of the hospital 3-8 hours later.

We feel VERY lucky to have found a Wonderful Doctor. :):)

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Here are a few things that have been helpful to me:

- Dress nicely. I've found that when I dress in a more professional manner doctors treat me more professionally and with more respect.

- Smile and present yourself as open and welcoming. Joke with the doctor if you're up to it. Treat the doctor as a much respected friend. The better rapport you develop, the more likely the doctor is to want to help you.

- Don't complain about other medical care providers you have seen. Complaining may turn the doctor right off, and they may think there was something about you that made these other medical care providers treat you unfairly.

- If possible, don't ask for too much at one appointment. Be respectful of the doctor's limited time. I know this is hard. I know that if you are traveling to see a doctor it may be impossible. However, when it is possible it may be better to make 2 separate appointments if you have a lot of questions.

Well, those are a few things I can think of off the top of my head. Let us know how your appointment goes.

Best wishes,

Michelle

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Don't complain about other medical care providers you have seen. Complaining may turn the doctor right off, and they may think there was something about you that made these other medical care providers treat you unfairly.

Thanks for the reminder, Michelle, because I think I may have done just that without the caution. I'm just so resentful sometimes.

And opus, I'm in total agreement with you. What I want the most is a diagnosis, and to have a rapport with a doctor who knows something about this disorder, just in case. But the things I've learned through this site and the books I'm reading have done more for my health than any of the sedatives, BP meds, etc. that the MDs gave me.

The next thing I'm going to tackle is a regular exercise program. :)

I'm curious as to what books the other members have read - The Dysautonomia Survival Guide is fantastic.

You're a special group of people. I can't thank you enough for all your help.

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Some books on nutrition that I've found to be extremely helpful:

The Metabolic Typing Diet by Wm. Wolcott

The Maker's Diet by Jordan Rubin

The Zone (although I don't agree at all with his use of fake protein)

The Glucose Revolution

The Recipe for Living Without Disease by Aajonus Vonderplanitz

The Healing Power of Whole Foods by Beth Loiselle

There are many others, but those are the ones I can remember off the top of my head.

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Okay, had the app't with the neuro on Monday. One of the nicest MDs I ever met, but he wound up doing the typical neurological screen (reflexes, etc.) Around the time he mentioned that heart rhythm has nothing to do with the nervous system, and "dysautonomia is an inherited condition called Shy-Drager Syndrome" - which of course, doesn't fit me - I knew that this wasn't going to work.

When I reclined, and my heart went nuts, I wanted him to check BP - instead, he felt my wrist and said, "Yeah, it's pretty fast." He noticed the fluctuations in BP on sitting up, standing, etc., but dismissed those (went from roughly 90/60 to 120/85 and back again as he checked.)

He really didn't know as much as I think he would have liked to, and said as much - he referred me to a cardiologist for an MVP evaluation. Which I already had, was told there was a "slight problem" with "a valve" but nothing ominous. I've been told a few times before that I have a heart murmur, but after I was reclining and my heart rate stabilized, that's when this doc listened with the stethoscope and said, "Well, no murmur or anything."

I just wanted to hurry up and get to the grocery store. :ph34r: I thanked him, told him I'd consider the cardiologist, and left. (I'm not going to another cardio.)

The sad thing is, this is the MD who's supposed to be the most knowledgeable in my area for ANS disorders.

Ah, well. Like I said, very nice man. If he were a GP, I'd switch to him. But it looks like I'll never get that Dx I wanted.

Hey, you and me, opus - on our own here... :blink:

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Hi, Michelle. I think I may do that one day, but it's not something I can swing at the moment. I'd like to, though.

What's interesting, though, is that this time - because of the insight and info I've been getting from your site, and the research it led me to do - I'm not doubting myself. I don't think anymore that I'm some kind of anxiety-riddled neurotic. :blink: You know, a couple of months ago when I began to have all the trouble with swallowing and standing up and all that, it actually occurred to me then that I had developed a phobia about being on my feet. When I'd experience palps over and over again while making dinner, I wondered if I had developed a deep-seated resentment towards housework or something - when the truth is that at times like that, I need to move around, get my circulation going, load up on fluids. IOW, I had taken relegating every symptom to "anxiety" to an art form - even the rashes were, in my mind, "anxiety". I doubted my sanity for years. Until the truly chaotic stuff started happened in June, I hadn't mentioned my symptoms to a doctor for quite a long time, because I didn't want to appear unstable.

But this time, I'm centered and I'm not angry with the doctor - he just doesn't know enough about this condition to diagnosis me. So until I can find a doctor who can, I'll just keep pestering you people here. :ph34r:

I'm really grateful for your site. I think I'd be pretty hopeless at this point if I hadn't found it.

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Pester away....we're happy to help you. :ph34r: I'm so glad the site has helped you as well. My goal in making it was to get the info out there so others didn't have to go through what I went through. Hopefully things will just keep getting better. I do hope you can find a doctor to help you one day. Where did you say you were located?

Michelle

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JLB,

Sorry the neuro didn't work out. Though you may want to consider the cardiologist as suggested. I had the same thing happen last winter. Went to a neurologist who was "suppose to know" about these things but instead got a lecture that chronic fatige syndrome comes from stress at work or at home. Actually I think it comes from uneducated medical "professionals". :-)

So the neurologist was a complete bust.

But I did make an appointment to see a cardiologist that my primary care physician recommended. I spent the next three weeks prior to the appointment taking BP and pulse records. Usually three at a time. Once lying down. One standing and then another lying down. I printed them out in a table and graphs (ok, I'm obsessed with the computer, I'll admit it.) and when I took them in to my cardiologist he nodded his head and said. Yep, this looks like POTS.

He then stepped out of the room, picked up his cell phone and called a colleage. I could over hear his end of the conversation that went something like --- "I have a woman in the next room who is very symptomatic and it looks like she has POTS. Are we doing anything for POTS now?" Ok, my confidence wasn't rising, but at least someone was listening to me and I felt a validation that was a long time in coming.

During the next few weeks, we had a tilt table test, some blood work and at least a path we could begin to follow. I now do my follow ups with my primary physician, who is also an outstanding listener and advocate. He lets me bring in all the articles I can find on the web and we talk about options and make plans together.

Sometimes it is not so much the specialist you see, but someone who SEES YOU as more than a bag of bones with symptoms. I remember once, the cardio came into my room took off his glasses and looked at me and confessed "POTS is really hard on a physician. We don't know what to do to make it better. We can try some things, but we really don't know how to help." This was perhaps the most honest conversation I have had on this journey.

Good luck to you on your own healing adventure.

EM

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Earthmother, What did you use to take your BP readings for your doctor? I have a self-inflating OMRON HEM-711. When I called the Omron corporation, they said the only BP reading that is deemed to be accurate is with feet flat on the floor, sitting, with arm resting on a table. Does someone else do your BP for you with a manual cuff? Thanks.

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Hi JLB,

You can read my story (and many others) at:

http://www.dinet.org/personal_stories.htm

Also, if any of you have been to a "doctor who is supposed to know about these things" but didn't, I'd like to know about it....especially if they are on our website. People are always asking me about doctors, and I'd like to know which ones you found helpful, and which were not so helpful. You can send me a personal email at: staff@dinet.org

Take care and best wishes to all.

Michelle

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I bought a wrist cuff as well. It was an AFK BDM-1. Didn't match with my doctors cuff at all. Waste of money though. My doctor told me upper arm cuffs are the best (and the most expensive). If you buy one, you better check it with your doctor's.

Corina

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