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Doctors who don't believe you


Lisa
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Before I was diagnosed with POTS, I had a doctor tell me that when you really believe that something is wrong with you, you will actually start to feel symptons even when nothing is wrong. Another doctor told me that I was making it up because my dad was putting pressure on me to play basketball, which was absoltely not true at all. I was just interested to know if any of you guys have stories like this, and how did you deal with it.

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Hi Lisa.

I have been having throat spasms and serious swallowing problems for more than three years. Over that time, I have seen almost 2 dozen doctors. Every single one of them told me "I see no cause for your throat problems. It's all in your head. Go see a psychologist". Eventually I did see I psychologist and after the first session he told me "Your doctors are crazy". Even he felt the source of my throat trouble was "organic" and not psychological.

In January of this year, I made a short trip to see a neurologist who knew a bit about dysautonomia. When I arrived I told him I already knew the status of my dysautonomia but wanted to know if he could help diagnose my throat problems. He didn't spend 60 seconds focusing on my throat. He gave me the standard neuro tests and a tilt table test.

After waiting almost all afternoon, he finally sat down and told me my autonomic nervous system was improving, but was not robust. He then had the nerve (no pun intended) to tell me that as for my throat problems "I was oversensitive to my body's normal functions". That was the straw that broke the camels' back. I lost it. I looked him in the eye and said "So if I were to wrap my hands around your throat and choke the life out of you the police report would read that you were 'oversensitive to my hands being wrapped around your neck'?". He got angry and started to say something but I put my hand up in his face and told him "Don't even waste your breath" and walked out.

A couple of weeks later I took part in a clinical study at the National Institutes of Health and finally got confirmation that I do in fact have some nerve damage in my neck that is causing my throat and swallowing problems. Most doctors do not want to tell you they don't know what is causing your problems. Even fewer want your opinion on what you think is causing your problems. Keep looking. There actually are some health care providers out there that are concerned about your health and your care. Good luck!

Dan

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Unfortunately, this happens all the time. My wife is at the point that she doesn't even want to see doctors any more. She has been told this so many times. She was just treated by Mayo and when she called her cardiologist to tell him that she was having problems with the new treatment plan, his response was "you should be doing nothing but getting better." Another doctor told her that her 180-200bpm heart rates were nothing to be concerned about. This was an electrophysiologist. Mayo disagreed with that. Now we just went to see our family doctor and he has normally been very understanding with her. This time he basically made it sound like it might be the way she is presenting herself. I was stunned. She has seen dozens of doctors over the last 2 years. Now we have an appt to see the head of cardiology for one of the major hospital chains here in the Twin Cities. We understand that there may not be anything they can do, but then they need to tell us that. It seems that because they can't fix the problem they try to shift the blame back to the patient with the thought "If I can't fix it, it must just be in their head". It is just INSANE. And the best part is that you are paying thousands of dollars for this type of treatment.

Sorry I'll step off my soap box now.

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I had an EP listen to my heart for 20 seconds and tell me I was a "princess on a pea". Another on told me that all women "my age" have these problems. It (not us) Is totally insane!

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Dan,

I was wondering how you found out you have nerve damage in your neck. I have had throat problems for 2 years since drinking radioactive iodine for Graves disease (overactive thyroid) That is when my symptoms all started. I have been hoarse constantly now for 9 months. My ENT doctor said there was nothing wrong by looking in my throat. I just needed to be on tranquilizers. I don't think so. I'm tired enough. What kind of test did you take?

Shari

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Hi Shari.

I signed up for a clinical study at the NIH - #87-CC-0160.

http://clinicalstudies.info.nih.gov/detail...87-CC-0160.html

The doctor (Dr. Barbara Sonies) is fantastic, though I know she will be out of the country until the end of the month.

During the study, she performed a modified barium swallow. This entails swallowing different textures of food/drink while they video-x-ray your swallowing in real-time (fluoroscope).

She also performed ultrasounds on my throat and under my chin, which demonstrated a mild tremor in my tongue. My swallowing problems are most likely due to my 2002 surgery on my cervical spine. Dr. Sonies believes the doctor 'knicked' the nerve and caused some temporary damage that should heal over time.

She did ask if I had ever taken any radioactive iodine, so I am sure she would be interested in seeing you. Also, do NOT start taking tranquilizers - especially if they are in the benzodiazepine family (Valium/Ativan/Klonopin)! They are highly addictive and can actually cause your throat problems to be greatly magnified. Hope this helps. Tell Dr. Sonies I sent you - she is the best! Good luck and let me know what you find out,

Dan

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my doctor told me there are all kinds of docs out there that can't deal if the fact that they can't fix everything so fall back on the "hysterical, all in your head" syndrome. he said it's a matter of insecurity and they suck. i had to laugh, because how many docs will say this about other docs. i go to him crying because of what one of the docs he's sent me to says and he says, why do you care about what that jerk thinks. you know something is wrong and i know something is wrong and that's all that matters. he's right. it is soooo annoying to deal with these guys, but now i just laugh at them thinking about what jerks they are and they are going, what what. they never figure out that i've got them figured out. :angry: morgan

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