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Here's A Fun One To Ponder....


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I was just talking to my parents tonight, thinking of ALL the tests that I went through before being properly diagnosed with POTS, Gastroparesis, and Ehler Danlos..................check THIS out -- all before the age of 21!! ---> scary!!...

Pulmonary perfusion scans

Pulmonary function tests

Pulmonary/Chest CT scans

Upper endoscopy X2

Barium swallow x2

Sigmoidoscopy

Colonoscopy

Laparoscopy (found endometriosis but were trying to find the root cause of my nausea - it wasnt from endometriosis either!)

Cervical MRI

Brain MRI

Lumbar MRI

Bone scan

Transesophageal Echo

Transthoracic Echo

Right Heart Cardiac Catheterization

Stress test/Stress echo

Multiple ECG's

Multiple chest x-rays

Crazy amounts of blood work/labs

Holter monitor

Nuclear Hida Scan

Peripheral Vascular Ultrasound

Abdominal Ultrasound

Pelvic Ultrasound

ENT testing

and FINALLY, DRUM ROLL, for more conclusive answers --- the tilt table test and gastric emptying study.

I'm probably forgetting a few tests before finding more clear cut answers to some of my symptoms.........unbelievable......just wondering, how were YOU put through the ringer before being properly diagnosed with autonomic dysfunction?? what tests did YOU have to endure before being properly diagnosed?

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Wow Angela - that is a lot of tests!

I think I was a bit easier to diagnose as my main symptom was recurrent syncope and my cardiologist has other patients with POTS so he was aware of the condition. I first presented with palpitations before I got the viral illness that seemed to trigger my POTS but this is the list of tests that I can remember having before being diagnosed.

ECG

Chest X-ray

Echo

7 Day Holter ECG Moniter

Cardiac Event Recorder

External ECG Loop Recorder

Exercise Tolerance Test

Electrophysiology Study

Reveal Device

Tilt Table Test

Quite a few of the tests were done before my syncope started and there was actually only 3 months between the onset of my frequent syncope and my tilt table test. The heart rate of 170/min with BP of 96/90 pointed to POTS.

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I never had any palps - mostly nausea was my worst complaint - hence the reason for all the GI tests/brain and cervical MRIs. I also had some SOB - hence the reason for all the pulmonary tests...........my vitals were always normal sitting, so nobody ever suspected POTS. it wasnt until a doc one day, "just to rule it out" were his exact words, had me stand up and take vitals and his chin dropped and he asked me if i felt my heart racing - I didnt, only thing i felt was that darn nausea and SOB that nobody could explain, even after extensive testing - then he told me my HR went from 90 sitting to 198 standing - ........i think that explained the SOB?? LOL.

....that started the cardiac work up, first with ECG -- a very bizarre P wave morphology on ECG, which then led to the echo's and cardiac cath (they were checking intracardiac pressures because my P waves were like mountains peaks on ECG, which was making them think right heart pressures were up = and when echo looked fine, they were thinking primary pulmonary HTN, so they did the cath to rule that out........

....phew, finally after all the invasive tests, they got to the tilt and concluded POTS, then after all the invasive GI testing and after the diagnosis of auto dys, they suspected my nausea could be due to gastroparesis (since gastroparesis is linked to auto dys problems) and did the GES on me...........

been a long road, but i'm glad they've figured some of this out! think i'll write a book! haha!

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Strange that you mention not having palpitations. I used to have infrequent palpitations that have turned out to be an atrial tachycardia on my Reveal recordings. Since being on beta-blockers I have only had 2 episodes of those palpitations.

The sinus tachy from the POTS is completely different - I am not aware of it at all. My HR hit 170/min on the tilt test and I felt really dizzy but had no idea I was tachy until after the test when my cardiologist told me the results.

Flop

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The list for me would be too long for here--I was sick for decades, and diagnosed at age 32. I'd had pretty much every blood test known to man, xrays, mri, mra, full gi series, yada yada yada...

It was so anticlimactic to have my TTT declared absolutely positive within just a few minutes when I'd been told to be prepared that the test might take an hour or more depending on how things went. I don't think we got to 15 minutes before my blood pressure completely bottommed out.

Nina

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Nina,

I'd be greatful that you only had to have 15mins of the tilt to get a diagnosis. I somehow lasted a full 40 mins then had GTN spray and another 20 mins tilt. They kept going as I didn't actually blackout but I did have several episodes of near-blackout with sky-high HR and lowish BP.

I've got to have another tilt test soon with me on all my meds and wearing compression stockings to see exactly what is going on at the moment. My cardio isn't sure if my current symptoms are POTS and wants to see if the treatment has normalised my response to the tilt test. Urgh, I can think of better things to do on a friday afternoon!

Flop

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Hi,

I had about 15 ER ambulance trips with blood test and psychiatric evaluation in 3 hospitals. Of course I was diagnosed with conversion disorder and all those "nonsense/garbage" disorder that the doctor gives you when he does not know what you have. I was not given any referrral for testing other than blood work and was sent home every time.

Then I went to Dr. Grubb for my diagnosis and NIH for testing where I finally got the medical proof that I was not "mentally ill"! So I guess I have the record of the less testing done for the diagnosis.

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Too many to recall and still don't have any diagnosis, except psychiatric.....that they are positive about. May have this, may have that.....but no doubt I'm all out psycho, as that is never questioned, nor is any proof ever needed by other medical people. Not one single doctor has questioned my psych stuff, but ALL question any real medical stuff. They go from Internist, neuro, cardio, or whatever to psychiatrist faster than the speed of light....it never ceases to amaze me. If the tests are off, they weren't done right, or I did something to throw it off. Or it is repeated till they get one "close enough" to normal. Then call it good. (Think 4 cortisol stims)

Then they say the therapists (yes that was meant to be pleural) that have evaluated me and said maybe depression, but the physical stuff can't be faked, are wrong and don't know what they are talking about.

I am going to go and be totally humiliated for the millionth time on Wednesday, but not before she does a bunch of very expensive tests first. They never mind doing the tests and making the money. I have been arguing vehemently about going to someone new for awhile now, but then I am "non compliant", and reluctant, which reinforces the fact that I am crazy. So now I can go and pay someone to tell me. Yippee skippy.

At my last ER visit, I explained the facts of periodic paralysis. The doctor was nice, they gave me potassium, I paralyzed twice. When I was better I went home. When I got the records, she said I was "reluctant to take meds that would obviously help me (I wasn't taking prevacid daily, with my gastro's okay, but not hers), She dropped my hand in my face and it missed (A lie) and therefore, my final diagnosis?

Conversion versus pseudoseizures.....

So I am still having tests, I have NO diagnosis, because no doctors here have the kahunas to diagnose me, unless they can say I'm a nutball......And I have even more to look forward to. Sorry, I guess this isn't fun for me....

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wow to think of the money that the insurance companies make off of one person! WOW!

i have had a boat load of testing done..and the same tests done multiple times..b/c the first ones where abnormal!

x-rays.. multiple

brain mri x2

ct mrix2-3

ct scan brain x4

ct of other various organs and such.. many

mri.. other many

ekg's too many

eegx4-5

EMGx2

pulmonary functions tests x4

spinal tap

ear testing

psych evals.. ;) im not nuts to some and am to others

endoscopyx2

colonoscopyx2

bowel testing.. alot

stress test

echo cardiograms.. like alot

ultrasounds

lab work-bajillion times

biopsies-various

im sure ive forgotten seeral things.. but most of this stuff had done in the yrs before every getting diagnosed!... some done after.. lots od testing after pots diagnosis.. still with alot of unknown answers...

soon to have more ans testing.. and other things done to add to my lists..

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No tests. Just diagnosed from symptoms, especially as I already has a diagnosis of Autonomic dysfunction from years ago.

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I know I can't name them all,don't even no the name of some,but in a9 month period I saw 18 different docs.

2TTT

3 Gastric emptying

endoscopy

upper gi series

Holter moniter

2 stress tests

Brain CT and MRI

Too too many blood tests to even mention

The test that includes putting your hand in a bowl of ice water!!

Another long and involved test to deterime low volume

Other Gi test(don't know the name)

There are many more can't remember all, but these are just a few of my favorites LOL

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EKG and ECHOcardiogram was the first two tests they did. Then after months of my symptoms not clearing up, the cardiologist did a Tilt Table Test which was negative but he was very suspicious of POTS so have a technical diagnosis of POTS but at first was diagnosed with IST but found my resting heart rate is low so that diagnosis doesn't match. But during ER visits I've had they usually just have done blood work to rule out heart enzymes or something like that.

- Tammy

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Well lets see if I can remember it all...

every blood test under the sun, multiple times (Mayo had a literal RACK of my blood)

TTT

echo

stress echo

dizzyness testing (ear)

hearing testing

pulomary testing with methocoline

2 MRIs

mutiple x-rays

EEG

EKG

colonsocopy

endoscopy

holter monitor

CT

two types of sweat tests

24 hour urine and others

multiple pelvic and lower GI ultrasounds

EMG

too many blood tests for everything from glucose to lupus to thryoid to deficencies - a literal RACK of the BIG tubes was taken while at Mayo, and there were plenty done before my trip there as well.

I'm fairly sure there is more - I'd have to review my Mayo notes and all the notes from before.

But this too is all before the age of 21. And I go back to Mayo on the 7th, so they may do more testing.

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Gee, this is a fun one!

glucose tolerance tests

24 hour halter monitor (3 times)

blood tests for anemia and vitamin deficiency

EKG (several)

Echocardiogram(2)

CT scan

24 hour urine

TTT (2)

blood tests for parathyroid, lupus, Epstein Barr

thyroid panel

complete hormone panel from endocrinologist

stress test

endoscopy

blood tests, blood tests, and more blood tests (I'm almost out of blood now)

can't think of more at the moment, but I'm sure there are more

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Not sure I can remember everything but the main ones were:

event monitor

24-hour holter monitors

EKGs

Echocardiograms

MRIs with and without contrast of brain

Glucose tolerance tests

multiple thyroid tests

Blood tests for anemia, electrolytes, illicit drugs

psychiatric evaluation

Finally the TTT determined the POTS diagnosis after 10 months of seeking an explanation for my illness.

Katherine

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Hi Angela,

What an interesting thread.

Unfortunately seeing your answers and remembering all the tests I have gone through, I realize that I might even overcome those that you mention. Probably because for many years, too many, I have been going from one specialist to another, losing the time - while my health was deteriorating-

Many tests were invasive... I went to the ER many times...Got into Hospital... Had surgery without needing it... They tried with different medications without knowing what was causing the problem...

They even extracted liquid from my spinal cord...

It has been a long, long history of tests and specialists.

If listed, I would forget many tests...

No, it has not been easy to get to some answers...

Love, Tessa

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