Anxiety...sigh...

[firewatcher]

Well I saw my neurologist today, just a checkup. I explained the ongoing turf war between the endos (I am the turf) and the decreasing kidney function. He said from my labs, it looked like I was "drying out," and needed to see a nephrologist (duh...) Then he goes on to complain about the "changing face of medicine," and how there have never been more educated patients and how them asking for tests just increases the cost of healthcare. Finally, he said that it was important that I control my anxiety because the tension was causing my daily headaches...huh?! I think that he needs to speak to my psychiatrist, or maybe I do. I have great frustration that I am not "figured out," but I don't think it qualifies as anxiety. I feel fortunate that I don't suffer from that, like so many do, whether they have POTS or not. The real shocker was his interest in my incidental pineal cyst, he wants a yearly MRI when everyone else was like "yeah, well you get those, it's no big deal."

Am I just not understanding anxiety? Rational concern over a possible physical condition that shows up on lab-work is anxiety?

[janiedelite]

It's easy for someone who's never been chronically ill with a disease hardly anyone knows about to make judgments. I'm sorry you had to go through that. I'm not sure what kind of relationship you want to have with this neuro, whether you want to even see him again. He probably thought he was being helpful, and maybe next time you can let him know you saw you psychiatrist who says you are anxious about having an illness no doctor seems able to understand?! If he persists in trying to blame you symptoms on anxiety, I'd say it was time to fire him.

[arizona girl]

Well I saw my neurologist today, just a checkup. I explained the ongoing turf war between the endos (I am the turf) and the decreasing kidney function. He said from my labs, it looked like I was "drying out," and needed to see a nephrologist (duh...) Then he goes on to complain about the "changing face of medicine," and how there have never been more educated patients and how them asking for tests just increases the cost of healthcare. Finally, he said that it was important that I control my anxiety because the tension was causing my daily headaches...huh?! I think that he needs to speak to my psychiatrist, or maybe I do. I have great frustration that I am not "figured out," but I don't think it qualifies as anxiety. I feel fortunate that I don't suffer from that, like so many do, whether they have POTS or not. The real shocker was his interest in my incidental pineal cyst, he wants a yearly MRI when everyone else was like "yeah, well you get those, it's no big deal."

Am I just not understanding anxiety? Rational concern over a possible physical condition that shows up on lab-work is anxiety?

I hear ya, I just had an follow-up appt w/my gastro doc, to try an pin him down on why my colon popped last year, was it the car accident or something else. I want to know so, I can decide if I should have someone go in and take a look. So far everyone is trying to say it was diverticulosis, except I had no abcess. Anyway instead of answering my question he goes "Well you look really good". This was after I had just told about the autonomic neuropathy. I looked at him and said "You, know, so that's my silver lining I look good, but that doesn't mean I feel well. Frankly, those of us who have invisible illnesses don't find comfort in hearing that." I might also add that hearing that from a male doctor, after I was just molested by another male doctor, made me very uncomfortable. I tried to get him back on track and then instead of answering a legitimate medical question, he goes: "Well why do you want to live in the past, it's over." I'm like "What it's not over I'm still having problems." Of course I started crying in frustration. Not surprising as I had to sit up in a chair for an hour and half, before he came in. You know what being vertical like that does to us. He never did answer me.

AHHHHHHHH!!!

[juliegee]

Grrrrrrrrrrrrr...Very frustrating, patronizing, and chauvanistic. I'm very sorry, Jennifer. I have a pineal cyst that is 4-5cm and has the potential to block cerebral spinal fluid at some point. For the 1st few years, I had MRI's every 6 months. Then, when no change occurred- I was told they were unnecessary. I even saw a specialist (upon my neurologist's advice) at Emory who told me that I would have to have surgery to remove it (YIKES!) when I was a "little old lady," he said around 70 y/o. That seemed eons away when I was in my early 30's.....but it's getting closer. He may have said that because it's large or because of where it is. Anyways, he told me to roll my eyes up to the heaven's every day. If I can't- time for an MRI- and/or surgery. I remember once in a while and I look just like my teenager. He says "Duh" and rolls his eyes at me. I do it right back

Hugs-

Julie

[erikainorlando]

Sorry you had to go thru that. Yea...they seem to all like to label a lot as anxiety. Now...I can get anxious...but that is not this obviously!!! Like I told my first PCP last fall....I have had a lot of anxiety in my day...and this is not that! She wanted me to go to therapy...I told her I would love to but I was way too sick to drive and "talk" for an hour....and then have to pay for it to boot!!

might be time for a different doc...good luck.

Erika

[EarthMother]

It can be really hard to speak up for ourselves in the moment, especially when our legs are dangling off the edge of an exam table like a child who's feet don't yet reach the floor. Perhaps we should each REHERSE a list of possible scenarios (afterall the Doctors seem to use the same old worn out lines -- why shouldn't we have a few scripts at our disposal.)

Words like ... "I am sorry, I don't think I heard you correctly can you please repeat that again." And follow up "What tests are you basing this finding on, I'd like to understand how it is you came to that conclusion." Or ... "Are you stating your professional opinion based on objective findings in my medical file, or are you asserting your personal theory of how this may appear to manifest in other people without my particular medical history."

Bottom line it should be some version of .... "Wait a minute, I think I just heard you draw causation from data that does not even appear to be corelative in my case. Before we go any further and address my case management in more detail, I need to know if you truly believe that statement about anxiety being a root cause of my symptoms. Because I need to be clear with you up front, that I can not work with any specialist who has pre-conceived judgements about my condition that could result in jeopardizing the quality of care that is required in both the diagnostic and management of a life limiting illness."

Shall we all get our note cards ready so we are never again caught like a deer in the headlights of an MD Truck?

[snakeshoes]

Hi Everyone,

My first post here. Some of you may have seen my wife on here - Shoe. She's got the dysautonomia condition (still not specified exactly what but at least we're in the right area of medicine now) and I'm just the guy who gets her to all the appointments and plays walking memory/advocate when the brain fog takes over.

I'm sorry to hear all the stories of bad experiences with doctors who don't understand, but at least I know my wife and I aren't alone. She's been to see so many specialists and generalists over the past few years that, when they fail to see anything on a standard lab test, declare that "maybe you just have depression" instead of looking for something more. As my wife would say, not only is that insulting to her to dismiss her condition, but it's VERY insulting to anyone who actually has real clinical depression as it's much more serious than they make it out to be.

Unfortunately, the only things that have worked for us are persistence and getting over the mystique of doctors. They fall into traps of thinking just like the rest of us. If you haven't read it yet, I highly recommend How Doctors Think as a good guide to getting into your doctor's head and learning some ways to prompt him/her to look down new paths. It's often very difficult to get a doctor to understand that the anxiety and depression came AFTER the symptoms and are not causing them, but it's a wonderful thing when it finally happens.

One thing that may help practically is to bring someone else along for the doctor visit. My wife usually has me come in with her to visits to her doctor so that I can help her remember things that she forgets to talk about and so that when the doctor looks doubtful I'm there to pipe up and say "yes, I've seen this happen and it looks serious to me, she's not exaggerating to you". Even with that, we sometimes get a bad doctor who doesn't listen/understand/work with us. Then, we just have to remind ourselves that we're paying doctors for a specialized service, just like a plumber or mechanic and thus we shouldn't put them up on more of a pedestal than those other professions - especially if they're not living up the the standards of taking us seriously and providing quality service that we would expect of those other professions. We've fired a lot of doctors before we got the great ones we have now.

Good luck and hang in there.

[erik]

That book looks very handy. I have trouble reading (just a couple months ago I read my first book since dropping out of college and it was quite an ordeal). I have good luck with audio and this book is listed on "audible.com" so I'm gonna give it a shot! Thank you for the recommendation!

http://www.audible.com/adbl/site/products/...UseBVCookie=Yes

I had a lucky experience with my doc. I asked him straight-up if my troubles could be stemming simply from anxiety... his answer was "no, but there is crossover". I think that is a simple and valid way to describe it. When one has an illness that is provoked by stress amongst many other things (as POTS often is) it becomes just another thing one has to work to "mitigate" like keeping extra hydrated (even though dehydration isn't the underlying cause), etc.

I personally get the "it's just anxiety" thing from my sister, not sure if it will ever go away as people become invested in their opinions (and can get locked in to them even to the point of delusion). So frustrating when those who need to be supportive, like family and doctors, end up being an aggravating factor instead. It's just "piling on" and rather cruel... almost a "self fulfilling prophecy" too, so if they succeed in stressing you out with their obstinance, they take that as evidence of their mistaken belief. Very hard and unfair to deal with amid a troubling condition.