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dano2718

Are There Any Doctors Who Do Real Investigation?

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Hey all -

Sorry this is long, but I am looking for some ideas, and any of your thoughts are welcomed. I have been taking stock of how medicine treats patients with "functional disorders", and I feel like it's a recipe for failure. I don't think I have a disease, but the same disorder of function that my dad has complained about for 30+ years - with some pretty wicked fatigue.

As I get ready to go to Vanderbilt and later on, the Mayo clinic, I am thinking they will use the same general algorithm I have run into before:

1) Run specific tests for rare diseases which I don't have obvious clinical signs of.

2) When the tests come back negative, suggest a non-falsifiable diagnosis such as "depression" or say "you are healthy, get plenty of rest, exercise, and eat right".

Thing is, my dad and I both have tried medical doctors who only test for diseases, and even humored psychiatrists with trials of sundry anti-depressants though we are fatigued, not exactly depressed. None of that has been much help. The only useful tests I have had to understand what is going on was with "non-specific" tests - which turned out abnormal: the TTT, and natural killer cell activity test.

Do any doctors investigate the way doctors did in the 1800's - like running non-specific tests (like TTT, serum neurotransmitter levels, cold pressor test, etc) and then subsequently more specific tests to answer the question of why the non-specific tests show up abnormal. I know it would be time consuming, but it seems much more useful than wasting time looking for rare diseases I probably don't have.

Is the kind of investigation I am talking about considered "bad practice" by the AMA??? Just frustrated by how difficult it is to get any clarity from most of my doctor visits - and tired of feeling sooo tired.

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I let my doc choose the tests to run!

When I have input he listens.

I suspect that Drs. have a protacol that they must follow- for three reasons. One being ins company rules ,to protect them from malpractice, and the standard that they were taught works best.

It is very frustrating how long a dx takes sometimes and its possible to meet with high or low abilites in any field. I think the human body is enormously complex and that's the heart of the matter.

BUT you Dr. should "answer" the concerns you put forth here. That is a fair expectition- I think.

good luck!

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Well at Vanderbilt they are doing research, so first of all they're obviously familiar with dysautonomia. Are you going there as a research patient or with an appointment? Were you not ever diagnosed with a TTT?

In my experience, the doctors in general have tended to test first for the more common/likely problems, and then done further investigation as needed. It seems strange to me that, unless your symptoms are so bizzarre that they end you under the care of Dr. House, they would first look at rare diseased... I mean, statistically speaking being rare, while possible, is not necessarily probable... and as the initial diagnosis of the simpler thing doesn't seem to fit, then new tests, new doctors with new ideas.

When you're talking about "functional disorder" with fatigue, I would think of anything congenital or acquired that affects the way the body works- which isn't exactly a narrow topic. ..

So basically it sounds to me that you need to find new doctors, not ones who for whatever reason (wanting to publish?) seem to be unable to consider YOUR best interest.

I'm pretty sure that Vanderbilt and Mayo don't work that way. As research facilities, I don't think they can afford to- FX if you were to do a med trial at Vandy, you'd have to meet the criteria of the patient they're trying to represent, or what would be the point? So they test you and all to make sure you have these things. It seems unscientific to start with the most narrow possibility, rather than start broad and work your way down. So I'm pretty sure Mayo would be good for you, too.

Good luck!!

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What you are looking for exists under an umbrella organization called the Institute of Functional Medicine. The clinicians and researchers who form and participate with this Institute are high-end, leading edge doctors, university professors and scientists in the assessment of individual people with problems, not named diseases with double-blind-placebo-controlled treatment protocols.

There is no such thing as a "typical case of you-name-it"; each person has a unique physiologic and genetic history which is associated with his/her current state. Tests are based upon the person and not the disease. They may be tests of genetics, energy production, detoxification capacity, digestive function, hormone and neurotransmitter production and activity, immune system and allergies, structure, stress-management capacity, and probably more I cannot recall -- even if what you have is called POTS. It is all the best science.

There are thousands of trained Functional Medicine doctors around the world -- many MD's, but other professions as well. Your doctor can take the training to improve his/her results. We are blessed in L.A. with a number of functionally trained physicians.

PM me for more information or go to the website, which I believe is www.functionalmedicine.org

Good luck.

OLL

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What was so great about medicine and doctors in 1800s? You think many things are not understood now, so imagine the fund of knowledge then?! You call an abnormal TTT a non-specific test, but actually it is clearly indicative of the autonomic dysfunction. If you want go further and seek out the cause of that, you may be disappointed - this is a relatively new area in medicine, with poor funds available for research. Since your dad had similar problems, there may be a genetic component, but here again there is a lot we don't have knowledge for. There have been some studies about a specific phenotype of beta receptors that may run in families and predispose one to conditions of low blood pressure and autonomic dysfunction. With an abnormal TTT and other tests of autonomic function, I don't think that Vanderbilt or Mayo Clinic physicians would conclude that you don't have a diagnosis or that "you're healthy".

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Hi,

What was the result of your "abnormal TTT?

What other symptoms do you have besides the ones you mentioned?

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I am being sent to an MDA clinic to see if I have a specific kind of Periodic paralysis. I find so many overlapping symptoms. Research for MD has been going on for 50 years and they still don't have a lot of answers. The type they are looking for in me was only discovered in 1971.

In relative terms for difficult illnesses, this is no time at all. They have a few genetic mutations for it, but are thinking there are many more to fit each type. And treatment is empirical.

I now wonder about the correlation between autonomic illnesses and underlying illnessess. It's like a chicken/egg thing. Does one cause the other or vice versa, or is it a combo of them that cause some to be so ill and some not?

These are questions that I am sure the researchers struggle with all the time. And sometimes they may not be put together except through happenstance. I think a lot of answers in research may happen that way.

I'm on an MDA forum and the person running it finds it very interesting that so many of my symptoms could fit in either category. My doctors lump everything into one thing. I don't hold that against them most of the time, but when I have some weird thing going on, and they aren't specialists in anything that's wrong with me, I guess I can't blame them. When all I had was "fibro" everything was blamed on it, now everything is blamed on POTS. Or a variant in the machine doing the testing, or I did something to skewer the results. That of course is the annoying one. it's so easy to feel that you are being totally blown off, but this illness isn't like a well recognized cancer that behaves the same way in everyone, and can therefore be treated the same way in everyone. And of course the more prevelant a disease is, the more attention it receives. I also believe it doesn't occur to many doctors that maybe more than one thing is going on, it's so much easier to lump things. It's not that you are being blown off, they just don't connect the dots. I am beginning to believe that could be a problem among researchers too. Staying too focused on just one aspect of something. Not out of indifference, but maybe too small a focus.

So the smaller populations of people like us who suffer with odd ailments, will be put on the back burner. I guess since this is such a new area, we should be pleased it has progressed as far as it has. (It's very hard to do that when you are lying on the floor with a broken something or other and the ER tells you it's somatization.) But, it's true.

I used to hear, "women had babies without hospitals intervening" , all the time when I was a nurse. My response used to be, and yea, life expectancy was 45, you had to have 18 children just to try and make sure a couple would survive to adulthood, and people died of the most simple things.

It takes a very long time and a lot of money to find anything, and then even longer and more money to try and find cures. And it takes a lot of interest. I typically find, if it doesn't involve people on a personal level, they really don't want to be much involved. When polio was killing everyone, a cure was found relatively quickly. But POTS isn't killing everyone. So it's not a priorty, except to a select few, and all of us.

I do find apathy on the part of doctors, or frustration. My doctor says I have abnormal stuff, but he has no clue what it means. It doesn't mean he doesn't care, he just doesn't know. And has stopped trying to connect dots. So, I do it. Bummer, as I am the sick one, but the way it goes. I have been written off by a whole lot of people, and I am really trying not to get my hopes up over this upcoming visit. I am almost always crushed by the results.

Then I find out there are 3 doctors in the world that know anything about this! So my chances of any answers are pretty darn slim. It takes a lot anymore for me to try any kind of tests or labs or see new doctors. Everytime I do, I say, this is the last time, then down the road, I try one more time. You never know, you might be that break through person. (and of course pigs do fly) but till we can't plug along anymore and as long as we are squeaky wheels, the researchers and doctors have to attempt to find answers. morgan

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Hi Ernie, and everyone else who responded- good things to consider

Well my TTT 2 years ago revealed what I have been suspecting, delayed orthostatic tachycardia with a delta of 50+ BPM accomanied with diziness, heavy breathing and sweating. I can usually manage the orthostatic symptoms if I am tactical about where I stand still, but the fatigue and brain fog gets pretty heavy during the day. The other stuff is much less frequent, and may be just from stress about this condition- sweats and chills, sweating through the night, palpitations in bed, and feeling like if I go to sleep I will stop breathing. Maybe treating the orthostatic symptoms will really help the fatigue much such that I can live without a more precise understanding of my condition.

I do remember (at times) to be grateful that this is just a functional problem, not a life threatening disease - but it does get frustrating at times.

Will let you all know how it goes at Vandy!

thanks :)

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Morgan

I hope you get some validation and answers to your most bizarre symptoms that docs have shrugged or labeled as anxiety/depression/psychosis or lather, rinse and repeat.

Whoever posted about doctors doing TESTS in the 1800 s ?? Are you kidding me? THEY HAD no tests back then like today. Heck, my doc will give me any test I want or send me to somebody who CAN do such a test (like he sent me to a cardio for a TTT since he is an endocrinologist and my ANS doc) He is good and savvy and spends time with me. He even emails but I do not abuse the privilege of email, and have shortened my notes CONSIDERABLY over the years since I just have learned to cope with the disabling aspects of the POTS.

I almost went to Vandy and did not as the energy of traveling and going off meds seemed nightmarish since I can STAY AWAKE for 48 hrs with no meds...especially in a strange environment.

I finally saw dr. Grubb who said in one glance, my TTT was an OBVIOUS POTS dx, i had tried most all the drugs I could deem safe/and afford. My existing doc had been great and I was so astute about the illness, Grubb said he had nothing new to offer me and said some patients were just like that. I had been sick for YEARS before seeing him and did not need hand holding or validation as I had been fortunate enough to already have that. But I wanted to see and ANS doc at the top of the spectrum just to see if I had missed something. These ANS doctors are great but none are magicians though the type of folks who have the FAINTING version of this seem to have better luck with doctors like Dr. G than us non fainters who are perpetually PRE syncope/fatigued. My HR zooms 40-60 just by standing but can also drop by laying flat a few minutes. My HR rose 55 BPM under a minute on my TTT. then got the nausea, lightheaded, felt hot and dizzy, etc.

So if you are going to Vandy and Mayo, consider yourself BLESSED...they may not find the UNDERLYING cause as it can be like finding a needle in a haystack....but they may have meds for you but you have to figure out the risk/reward ratio of that..

I spend 80-90% of my awake time RECLINED or in bed and the short time I am up, I make the most of it and even exercise three times a week. I have exhausted my "new theories" after being disabled since 1990. I have been there and done that by now.

For those of you dx formally, less than 1-3 years, better chance of reversing things, ESPECIALLY if sudden onset. Mine was gradual and subtle for YEARS before I finally had to quit work.

Why am I rambling? I guess because just because WE are feeling like **** and frustrated is not ALWAYS the fault of the doctors. We gotta be our own advocates, read all we can and arm ourselves. I was fortunate enough to find another site with people who shared things and one lady sent me EVERY ARTICLE on POTS in the mail from Drs. Grubb, Robertson or Low, etc. I checked medical books out of a hospital a friend used to work out of.....and THAT's how I learned what tests to asks about.

AND my endocrinologist has figured out things to routinely screen and recheck...so, sometimes you just gotta accept.

Then again, if you have the money and the insurance, by all means TRY AND TEST everything there is if a doc will order it.

Good luck

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Hi,

It is a very frustrating disorder. Not much is known yet about it.

Vandy and Mayo will probably confirm the POTS diagnosis and suggest a treatment plan. As for the etiology ......... even less is known about it.

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My POTS specialist did not recommend further testing beyond the TTT. He said there would be nothing that would tell me anything more about how to treat my symptoms or to predict the course of the condition. He said finding the right meds to reduce/eliminate symptoms would simply be trial and error. If you or your doctor suspects something besides POTS, that has not been picked up, perhaps b/c it is very rare, then it would certainly make sense to do further testing.

Katherine

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Dano,

Have you been tested for sleep apnea?

I did have had a sleep study which showed mild apnea during the few hours I was asleep - the Dr. said it probably was not significant to be helped by CPAP machine.

I got to meet Dr. Biagioni at Vanderbilt this last week and he confirmed my previous TTT results and added me to his database for future trials. I guess I misunderstood that his clinic is primarily for research and not as much for treatment, but he is going to work with my GP on trying some drugs for treatment.

I didn't mean to say medicine was better in the 1800's - no way! <_< I guess the reference to medicine in the 1800's is from reading about the discovery of diseases at that time by methodical investigation of patients with poorly understood complaints. Today practice is much more of a standard algorithm - if the symptoms arouse suspicion of a disease, run the highly specific tests for that disease. If test results are negative suggest a psychiatric etiology.

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