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The most common one is psychosomatic, but I've also been dx'ed as bipolar (rapid cycling and very uncontrolled even with meds), anemia, migraines, anxiety, *JUST* GERD (and not gastritis and Barrett's Esophagus along with that), runner's knee (when I was 10, and I didn't even run back then since I got lightheaded)... I was also diagnosed and treated wrong for patellar subluxations (I had a lateral retinacular tendon release... my only non-stretchy tendon in my knee, so know they're even more messed up before the surgery), which has made the POTS worse. I had my last knee surgery Nov 09, and was dx'ed with POTS Jan 10. I had POTS symptoms before surgery, but they were exacerbated by the trauma of surgery... so what is really frustrating is that if I'd been dx'ed with EDS before my surgery, I wouldn't have had surgery, my knees would be pretty terrible, but not on the level of horrible they are right now, and I would have as many POTS symptoms.

I'd also forgot drug seeking, too... It's not my fault that EDS HURTS, especially when knees and hips are constantly popping in and out of place. But, no.. tylenol should take care of that pain, never mind my knee has not been able to stay in place for the past 3 days straight unless I'm wearing the immobilizer.

I know there are many more mis-diagnoses I've been given, but I'm really trying to forget about all of the wrong diagnoses and horrible doctors who gave them. What matters now are the 3 good doctors and diagnoses I have... If I were the type, I believe that I could have a nice lawsuit, but since I don't relish talking to lawyers (I hate them even worse than doctors... with good reason, long story) I just go into a new doctor with the knowledge that I most likely know more about my own illnesses than he does and pray that I'm pleasantly surprised that, no, for once they know more. That's happened only once, but if it can happen once, it can happen again.

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Let's see. I was mis-diagnosed with:

bipolar disorder




autism (this was my fave--diagnosed autistic at 28 years old!)



hysteria/conversion disorder



chronic fatigue syndrome

I think malingering/drug-seeking was the worst, because then the nurses treated me awfully. They wouldn't help me off the floor when I fell, they wouldn't help me get cleaned up, they wouldn't give me anything for pain. I was so miserable that I contemplated discharging myself AMA.

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I've been incredibly lucky. It took a long time, but my first diagnosis was my heart problems. A year and a half later, I was diagnosed with POTS. Believe me, I know how fortunate I am. I now have a really good internist, gastroenterologist, and cardiologist (still need to find a good neurologist). I even like my dentist! As I've been reading the posts about people losing their doctors, it's made me realize just how happy I should be. And, I've never been diagnosed with anxiety/depression, etc. Perhaps this is because I've been on an SSRI for the past 10 years.

Good luck to you all in finding good doctors!


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For my son it went:

Abdominal Migraines


He just doesn't want to go to school


Autonomic Dysfuntion(no tests ran)

Depression/Anxiety(even after psychologist ruled this out)

POTS after TTT + Gastroparesis + Small Fiber Neuropathy

Plus-Sleep Study done-Restless Leg Syndome-Told not to nap during the day even though he is so sick

(Took 3 years for correct diagnosis. We saw 1.Gastroentrologist who referred us to- 2.Neurologist who referred us to-3.Biofeedback Internist who referred us back to- 4.Gastroentrologist who referred us to- 5.Psychologist who referred us to 6.Cardiologist who diagnosed but was no help-Pediatrician referred us to- 7.Diagnostician(he was definietly no Dr. House). I then called Cleveland.)


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Guest humanb4monitor

I got:

you areSOOO weird

Why don't you sleep right?

why don't you eat right?

why can you do THIS but not follow through with that?

calm down


eat better and see a shrink

why can YOU take that med? everyone else can!

Be like everyone else.

always a "you do NOT fit"

BUT the irony is....good people think I am ducky.

Losers don't.


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Guest humanb4monitor

oh..and IF You laugh and cry within like 4 minutes:


can you imagine someone just blurting that out!

I read you can :P:rolleyes:

Such dismissla nd disreagrd.

My evil doers.......they never ever wanted to investigate my 'invisibles' after I was diagnosed with POTS. Even though all the data answered eveything!

It would blow people's MYTHS about us wouldn't it?

Yet the incison on my back can be SEEN so people like me better now.


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I lOVE this thread. None of these were accurate, but some of my more memorable DXes include:

-Autonomic Dysreflexia (Still in my records :rolleyes:http://www.childrensmn.org/Manuals/PFS/Condill/038355.pdf)


-Addison's Disease

-Ventricular Septal Defect








-Loey's-Dietz Syndrome

-Fibromuscular Dysplasia

I just know I'm forgetting some.....

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Guest humanb4monitor

I asked for allergy testing once. I was sooo desperate!

The doc looked at me....well..you know.

Like I was a martian. (maybe I am :P )

I said

"If I was 10 would you look at me that way?"

Since 2006 maybe, If I am abused on any level by a doc who is NOT 1 of my many hero docs, I will actually stand and say, "do not ever ever come near me again.'

That has backfired a few times but....

A Human Rights/ Civil Rights org is now going to bat for me against the creepiest guy EVER who TOOK a doc away that could have saved my health in so many ways. The great thing about this org compared to the CORRUPT State Med Board is docs are NOT allowed in your records with these people. They are allowed with Med. Boards.

So they snoop back 100 years like little children to try and find others who 'found you difficult' so they can whine like babies.

You will have ahuman Rights Commission in your state. Discrimination on on levels is whatthey deal with as well as refusal of treatment based on BS.

The HR/CRight people travel and look at them and say Prove it?

Show me times, dates, quotes where she did something so bad (slander) that you barred her.

I have a movie on and the heoine just said:

"I am different and you will never forgive me for that." :rolleyes::P

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Like POTSgirl I was very lucky - from the get go my symptoms were so severe as to be unignorable - no amount of 'anxiety' could make a persons blood pressure drop to undetectable levels within minutes of a TTT. I lucked out and within a few weeks of my symptoms starting I saw a neuro in the hospital who knew his stuff and had me on a tilt table in a matter of weeks. From there out treatment was underway.

POTS was actually my 'misdiagnosis'...

but it was all that fit at first.

I have an awesome cardiologist who has been willing to turn over every stone - Most of the doctors I have seen over the years have either been open and honest about not having an answer, or have been willing to try treatments without solid answers.

I am reminded from threads like this to be thankful for my team of docs.

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Great thread!



Not IBS but we don't know what it is.


Not Asthma but we don't know what it is.

You're just weird

We all know you're weird

Oh, that's just your body being weird again

Bipolar and then "not bipolar"

Post-partum depression

Generalized anxiety disorder

Panic attacks

PTSD but you don't have a history of trauma

Pre-birth nervous system damage (apparently from "hearing" my parents argue while I was still in-utero)

Bleeding disorder.... but we don't know what it is.

Hormonal disturbance... but we don't know what it is.

A spiritual problem.. go see a healer in Argentina.

NO, you're not hypermobile because your index finger only extends to 90 degrees. It doesn't matter that you can play jump rope with your arms and do a backbend with your head in front of your feet.

The list could continue in the same vein for quite awhile.

Mostly I've just avoided docs for a long time because I knew they weren't going to be a help and I got frustrated by the "looks" that implied I must be making it all up. I've done a lot of alternative therapies and even those people were baffled by my situation.

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Great post, Jenn!!

I got:


Menopasual Symptoms

Atipical Depression

Anorexia (turned out to be gastroparesis!)

PTSD (from going through a divorce, moving, being alone)

The best was from an ER dr who spent two minutes with me and wrote on my discharge papers: NEUROTIC!!

This was after being diagnosed with dsysautonomia. I still don't have the right drs and half don't get it! Heck, I don't get all this myself.

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My thought on this..... Let's start "labeling" the doctors. Here's my list:


Maybe impotent and that's why the attitude



Money hungry

plugged ears(since they don't seem to be able to listen to a ##### thing we say

graduate of online physician program

Power kick syndrome

Care to add any that I may have missed?

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