Misdiagnosis-of anxiety/mental health issues

[persephone]

Hi guys, the reason I'm asking is that my records came today from the hospital that told me POTS didn't exist , back in December.

THERE MUST BE LOADS OF PEOPLE IN THE SAME POSITION AS ME- WHO HAVE POTS AND WERE TOLD THAT THEY WERE MENTALLY ILL!

They've printed out ECGs showing atrial flutter (do any of you have this? I thought POTS was just sinus tachycardia) isn't a f dangerous? can't it cause clots in the heart?

Anyway, the point of this post it that nowhere does it actually SAY in my notes "she seems to be panicking/nuts" or anything. just that I've had some episodes and my pulse has been ok. smart people these though- did they think to EVER take myblood pressure following a bad spell? **** NO!

But the neurologist's report says that I have a panic disorder.

I actually think my notes are incomplete- it's only a photocopy that I have. There are NO comments from my consultant cardiologist whose care I wsa under at all- isn't that weird?I mean I was there for 6 days. It lists the tests they PLANNED to do- CT, echo, paced breathing etc...but they never even did them!

And even on the neurologist's report, there are blank bits that look as if it is perhaps possible they were tippexed.

They've also omitted to mention all of the incidents where my pulse was racing at 150 and I couldn't see, and the technicians came rushing to me because they could see it happening on their screens!

It makes me so angry that I was misdiagnosed in this way. When I did eventually get to see a POTS expert, I discovered it can be quite common for people with autonomic dysfunction to be misdiagnosed like this.

So--if you'd post feedback, Id be very grateful. Feeling pretty miffed- have waited 7 months for these notes! I want to see exactly how many of us have been told the same drivel!

Sorry not to be cheerier today folks!

P

[MomtoGiuliana]

It sounds like you didn't get a complete report. I can certainly understand your frustration. I agree that it is likely that the majority of us have experienced misdiagnosis. I had doctors diagnose me with both anxiety and depression, but depression was the more popular diagnosis, since I was in the post partum period when I started seeking a diagnosis.

I hope someone can answer your question about atrial flutter specifically. POTS causes more than sinus tachycardia, it commonly includes other irregular rythyms, but not ones that are life-threatening for people with otherwise normal heart function.

Katherine

[dizzygirl]

Persephone..

i am so sorry about th report that you recieved...your record saying that you ddint have POTS. that is just terrible, but par for course I afraid.

So many us of us who have POTs have been through the mill, when it comes to being told that they have a psychiatric disorder.. when in fact it is not..I think that it is very normal to have some anxiety and depression, when you feel so horrible, and feel like you are going to pass out, or do pass out.. very knowing when it will happen, or how you will feel... and not to mention the Hr issues that we all have.. there is no mistaking that..

When I first got sick, and was bed ridden, On easter sunday, I entered up being taken from a hospital in my home town, to a hospital over 2 hours away, and my BP was sky high, and my Hr was also quite high... thuinks were just very unstable.. well instead of them treating my BP&HR issues, they assumed that it was all psychological and that I was having panic atacks, and that that was why things were so high..and since I had a previous diagnosis of depression and PTSD (dx from 5 yrs prior) that it must have been that.

Well anyways getting to the point of my story, instead of treating the problem I came in for, they treated it as a psych, prob. and kept giving me shots of Valium through an IV, which I very quickly found that I was allergic too, but they kept giving it to me, and you know what it didnt do a darn thing to lower my HR & BP, it went up higher instead of lower..

So what they did instead, was they sent me over to a locked psychiatric unit, and stuck me in a little room.. I could barley hold my head up, and my HR &BP were stil out of sight.. in the end the head psychiatric doc came in, and did a psych eval. and talked to me, and checked my HR and she could not believe that they sent me over there when things were so unstable...she concluded that I was fine mental health wise, and that I should be over in the Er department.. not getting mental health unit.. she personally took me back to the ER, and she chewed the ER doc out, and they eventually caled in the Neuro doc that was suppose to have been called 12 hours prior when I first got there..

so I know how you feel about the mental health things...have been there done that!

I wish you luck persephone and hope that things get straightened out..I wish you lived here in the states.. you could get in and be seen by some of the POTS doc here.. like DR. Grubb or Dr. Fouad..

hang in there.. and dont believe those crack jobs.. who say it is all in your head and that you have some psych. disorder.. you know you and you know what you are feeling and going through. and that POTS is VERY real!

we are here for you!

dizzygirl

[dizzygirl]

Holy Cow! I just seen all the typo's that I made.. sorry! its a potsy kind of day..cant think clearly!

[janineerrn]

I had been told by 6 doctors that I am menopausal and have a panic disorder.

Obiously I dont see them anymore.

Janine

[Dawg Tired]

"All 43 year old women have this problem". I wondered how many 43 year old women that doctor knew - I had never me another 43 year old woman with the same problem I have. He sent me to a neuro whose notes I got and they state "patient obviously has an anxiety disorder."

God help any of us who become frustrated to the point of crying after being told we are mental!

[morgan617]

I marked other, because you can only click one. Anxiety, panic, borderline,conversion,hystrionic,narcissistic, somatization. Those are my official diagnoses. The funny thing is, my therapist of 15 years says she doesn't see any of these disorders in me. But she's only a shrink, what could she possibly know.....morgan

[ariella]

Persephone,

sorry you're dealing with this. Usually the worst I get from my doctors is that they don't know, therefore won't treat. However, did have (not related to POTS, neuromuscular issue) breathing distress Friday night, two hours of air hunger set off POTS symptoms, when the ambulance people saw my tachy and shaking, they at first didn't want to take me to the hospital, said it just looks like anxiety. When I told them that I'm being evaluated for a life-threatening neuromuscular condition, they finally agreed. Pulse oxygen went down to 90 in ambulance (so much for anxiety). Home now, not out of the woods, still struggling to breathe.

Ariella

[ariella]

Dizzygirl,

Your story is unbelievable. Something similar happened to someone I know who was in real respiratory distress, but in her case, she was the one who demanded to see a psychiatrist because they told her it was just stress. They hadn't picked up the resp distress b/c it was caused by neuromuscular disease, which presents differently and shows different signs (for examlple, pulse oxygen will usually be normal if patient is conscious). This psychiatrist also saved her life and had her sent to the ICU. But your story takes the prize. I know, I know, you would rather not have the prize. It's very frightening to know that even when we present objective data, we are not given proper treatment.

[dizzygirl]

ariella,

i wish that we were treated better by the medical commmunity... and taken more seriously.. instead of being brushed off as psycho cases !!!

[MomtoGiuliana]

I have to add, after seeing dizzygirl's awful story--I was ALSO placed in a locked room meant for psychiatric patients when I arrived at the ER in Feb 2003. I think they thought I had a mental problem b/c I said I could not stand and felt faint, but my bp was sky high. I was admitted to the hospital after initial blood tests showed that all my electrolytes were low.

Katherine

[dizzygirl]

katherine..

i am so sorry that you had a bad experience with m/h. !!!

[DawnA]

I ahve been labeled as depressed , anxiety disorder, panic disorder, conversion disorder, and bipolar. It is a pain to have all of this stuff in your medical records. Even with all of my dxs and some effective treatments proving everyone of these wrong, I have had Drs label me. On my Mayo trip I told the neurologist that I used to have panic like attacks before I was treated for POTS. He labeled me with panic disorder. URGHHHH!!!! So frustrating. Once you are labeled as crazy you are always crazy!!! I do have depression that is alleviated by Rx but the Drs make such a big deal out of it. It bothers me that so many of us are labeled with these things, just have to laugh it off and continue to try and prove the Drs wrong!!!!

DawnA

[Guest Julia59]

Do you all mind if I copy this posting and take it to my psychologist tomorrow? She has believed in me from the beginning----and I found it ironic that SHE was the only person who tried to help me find the physiological cause of my illness. I used to see Dr. Davis who is a friend of Dr. Grubbs, but my insurance does not cover him very well---only 70 %----so now i'm going back to BETH. She is wonderful, and will help guide me through this mess.

I am mainly seeing her due to the many loses I have encountered since being diagnosed with POTS---and the other spinal/cranial/EDS problems. Also, for the overwhelming grief from the unfair treatment of cruel and ignorant doctors. I have also found it very difficult to organize my thoughts about the combination of medical problems I have, and the surgery I was told was needed to correct the cervical spinal stenosis because it is causing myleopathy. Too much for my brain to handle right now.

I would love for BETH to see all the bullroar we (all) go through. It seems to be a never ending cycle.

Julie :0)

[deeplyset]

Hey to bad you can't vote for more than one! I would have mark three!!!!

somatoform/conversion disorder, depression/anexity, and panic attacks!

So frustrating!

Do you all mind if I copy this posting and take it to my psychologist tomorrow?  She has believed in me from the beginning----and I found it ironic that SHE was the only person who tried to help me find the physiological cause of my illness.  I used to see Dr. Davis who is a friend of Dr. Grubbs, but my insurance does not cover him very well---only 70 %----so now i'm going back to BETH.  She is wonderful, and will help guide me through this mess.

I am mainly seeing her due to the many loses I have encountered since being diagnosed with POTS---and the other spinal/cranial/EDS problems.  Also, for the overwhelming grief from the unfair treatment of cruel and ignorant doctors.  I have also found it very difficult to organize my thoughts about the combination of medical problems I have, and the surgery I was told was needed to correct the cervical spinal stenosis because it is causing myleopathy.  Too much for my brain to handle right now.

I would love for BETH to see all the bullroar we (all) go through.  It seems to be a never ending cycle.

Julie :0)

<{POST_SNAPBACK}>

[persephone]

I know what you mean...I' ve bben told I've got depression ANd anxiety before now. In my notes that came from the hospital, there are refs to Atrial flutter, tachycardia etc and then all of a sudden, it just changes really abruptly once they find a note from 1996, when I was a teenager, about feeling anxious cos I wasn't happy at school.

Then they magically deciphered my notes and *KNEW* (read: decided) I had a psychological problem:(

Julia, do you find it helps to speak to someone about your problems with Doctors? My mum says maybe I hsould talk to someone- it eats at me al lthe time, and is worse since I got the notes from the hospital- I just feel *SO* disappointed

[Alicia479]

When I first starting have symptoms, my PCP send me to a neurologist who thought I had MS. For months I underwent test after test, all along the way the doc insisted we would figure it out. I kept deteriorating so a different doc recommended I go to the mayo clinic. It was not until I have requested my records so I could send them to the mayo that I saw that the neurologist who had repeatedly told me that he thought it was MS wrote in my records that he though it was a coversion disorder. I have never been so mad. The funny thing was, I wasnt mad that he thought it was a conversion disorder, I was mad that he did not send me to a psychiatrist. So I went to one myself for evalution. I was so desperate for a diagnosis that I was actually hoping that was what it was. The psych laughed at me and said it was not psychological and that the doc probably just wrote that in the records to save himself. I was so disappointed. It seemed (and still does) that that would be so much easier to treat. So yes I have had it written in my records but no, unfortutaly, that is one thing I do not have.

[lthomas521]

This poll should let you pick more than one. I have been given different psychiatric diagnoses at various times. However, the psychiatric diagnoses were all based on the assumption that there was no physical basis for my complaints of exhaustion and orthostatic problems (either orthostatic hypotension or POTS, it has varied over time).

I too got a conversion/somatization disorder diagnosis at Mayo. They also suggested a personality disorder, because they thought I was going to a medical appointment just for kicks.

[BuddyLeesWife]

It was the psychiatrist that suggested my husband get tested by both a neurologist and cardiologist to determine the cause of his syncope since he saw nothing psychological to explain the events.