Anxiety Disorder Misdiagnosis

[melly4]

I'm just curious how many people were told they had an anxiety disorder or depression before being given a dysautomia diagnosis. It's interesting, but I was reading in a physician's guide to rare diseases under "dysautonomia" and it listed the symptoms that so many docs today call panic disorder. Of course, there was no entry for "panic disorder". When I took my son to a cardiologist with a heart rate in the 130's and a BP swinging from 170/110 back down to 90/50 with near syncope episodes, the doc asked me if he had school anxiety from other kids. My son is home schooled!! I just about got up and left. That doc has since been fired!!

I'd love to hear your stories.

Thanks,

Melly

[baby_boy]

Yep i have it ALL the time with my doc. One time i was walking down the road and my HR rose to 190 for no reason, i had hot rushes through my body, felt spaced out, my hands went tingley, Tachy. kicked in ect ect. I went the doctors and he told me its normal, he said from you records i can see you worry alot, he said i dont need any pills, just need to calm down and gave me some achne pills. I was like What the %^~# is going on. I went to every doctor in that surgery and all claim i have severe anxiety and still give me no pills to take.

Im sick of these so called specialists that guess your diagnosis.

[melly4]

Amen. My son has been given no meds despite his signs and symptoms. My docs just continue to give me any anxiety meds they can that either make me have really bad reactions or just don't help at all. I understand how frustrated you must be. I think that there is so much unknown in the medical field about the nervous system, and those that have problems are either treated as guinea pigs or completely ignored because some doctors just don't have a clue as to what to do. Hence, you hear things like "you just need to take it easy and destress your life" or "here's a script for xanax or paxil." I'm happy with my life; I just can't stand these bizarre, scary symptoms that no one seems to have a logical explanation or good treatment for.

[dizzygirl]

Melly

Hi I wasnt exactly sure which one to pick..I have been told that I have major depression and PTSD (which in my case is true) but recieve "theraphy" for these and have done well.. but since I was given these diagnosises when I was 15.. they stuck.. and every doctor I saw said well all your problems are psychological..

I'm like no there not..WHATEVER!!!

and that everything I had been experiencing was all in my head..yeah being in the ER with 191 HR rate is in my head..

Anyways i think that my favorite diagnosis.. has to be that I am a manic depressive Bipolar!!!

Any one who really knows me.. know that that is just obserd!!

I still get the "mental health diagnosis" thrown in my face since every once in a while.. when dealing with a ding dong of a doc..

But in the past 3yrs..4 cardiologist/EP docs have confirmed that I indeed have pots..I feel VALIDATED!!! 2 of those doc being Dr. Grubb and DR. Fouad..

so.. i wasnt sure which one to pick..

But yes they fed me tons of antidepressant meds as well as psych neds.. and OMG!! they made me gain a great deal of weight!!

good luck..

[melly4]

Thanks for your input, Linda. After seeing a general practitioner for tachycardia and heart palps, he, too, diagnosed me with bipolar disorder because none of the anxiety meds helped me. He had initially diagnosed me with panic disorder. He then referred me to a psych doc to treat the "mania", and the psych doc told me I didn't have any mental illness, but anxiety from the symptoms I was experiencing. Like you, I felt validated. The psych doc told me to find a good internist, who tested me for everything, and after my son developed similar symtoms, suggested dysautonomia. But we just moved, so we're searching for someone else equally clever to help us.

You also mentioned that you can never drop the mental illness label once someone tries to diagnose you with it, whether you have it or not. I had a head trauma and a cervical spine injury, and when EMS saw that I was taking klonopin, they put in my records that my diagnosis was anxiety. I had a hole in my head and almost broke my neck!! I also had to have my gallbladder removed, but only after being misdiagnosed twice because both docs decided the reason I was vomiting and in pain was due to anxiety. By the time I had it removed, the surgeon told my husband she was glad she took it out when she did or it would have ruptured!! Another guy I know, who has panic disorder, went to the ER one night with chest pain and was sent home because they saw he had been there before with an anxiety attack. He later suffered a massive heart attack!!

I'm sorry you've suffered from the same ignorance.

[dizzygirl]

Melly..

OMG!! I so sorry for what you have endured.. and what you friend went through too.. that is just terrible!! It makes me want to cry...

please hang in there!

and I hope that you find a doc to help you and your son soon..

[KathyP]

Hi Melly;

My understanding is that anxiety and/or panic disorder is an effect on the body caused by dysautonomia. A symptom, if you will. Dysautonomia is multiple symptomatic. People diagnosed with irritable bowel syndrome could very well have dysautonomia also. Where you diagnosed by a physician with having dysautonomia? I apologize if you stated this in another thread and I missed it.

I suffered with anxiety for several years before being diagnosed with dysautonomia. I still have an anxiety/panic disorder but it is due to the dysautonomia. I have come to the realization that my anxiety disorder was properly diagnosed, but I needed to know "why?" I had it. Most often doctors stop at the anxiety diagnosis, call it a disorder and treat the discomfort of it. Other doctors, who know about dysautonomia, look further past the anxiety disorder and find the underlying reason, which is usually dysautonomia.

Anxiety and unexplained panic is the bodies way of telling us that something is wrong. It is the flight or fight kicking in to alert us that there is a problem. This is controled by the autonomic nervous system. A mis-firing or inappropriate reponse of the nervous system, such as unexplained anxiety, is a dysfunction of the autonomic nervous system, hence dysautonomia.

You are right, dysautonomia is a not a well known syndrome. The best I can suggest is to keep looking for a good doctor that you feel comfortable with and who knows about dysautonomia. You need to find what works best for you. I have tried so many different remedies. Yoga and deep relaxation has worked wonders for me.

I can't stress enough the importance of educating yourself as much as you can about dysautonomia and spreading the word. It is most important to find a knowledgable doctor with whom you can be open with. I hope this helps.

Take care, KathyP

[baby_boy]

Melly:

I totally understand what your saying. The medical world is like a big hole in the science field. I think doctors need to take Anxiety seriously, i belive in my opinion in later life it will cause big implications. If stress can cause a Heart Attack, then im posative the stress from Anxiety can do the same thing. The dangerous stress is when you overwork your body whilst doing nothing, example, when you sit down and get stressed with a PC and start getting mad. Anxiety comes on for no reason, Raises the HR and BP so high sometimes we think we are gonna die, it also releases alot of adrenaline, and makes your body overwork, so 5 episodes a week cant be good. My theroy prolly holds no sense at all, but im just adding 2 and 2 together.............prolly ='s 6, lol.

[melly4]

Thanks, everyone, for your support and info. Kathy, I have not been given a formal diagnosis by the two doctors (psych and internist) that I was seeing before I moved. They were treating the anxiety symptoms and running tests to find a cause for the panic attacks. They must have checked my thyroid a hundred times!! I've lost a lot of weight. My son is also very thin, and we're both healthy eaters. I have irritable bowel and chronic migraines. My last visit with my internist was when he suggested that my son and I may have some form of dysautonomia. Our insurance kicks in down here on the 15th of this month, so I will be searching for another doc to help us. I hope we get lucky the first time. I went through several where I used to live before I found anyone who seemed knowledgeable.

[Jean123]

I believe that my son has some degree of anxiety and has since he was young however, since he does they want to blame every single thing on that diagnosis. They over analyze every move he makes. I'm glad to inform the forum that his POTS symptoms have improved significanlty however, he still can't walk. His cardiologist who diagnosed him with POTS said that his symptoms could go away and they have however, he now has muscle spams so severe that his entire body rocks when he tries to move. After a year he is finally able to sit up straight without his body rocking or his heart rate jumping up to 130. Whenever he bends slightly his body rocks due to muscles spasming. The anxiety diagnosis has created many problems throughout his course of treatment because, the docs won't run test to rule out other things. They blame everything on the anxiety. He has been in at The Institute for Research and Rehabilitation for the past month and will be there at least another month. We had to get rid of the neurologist from TCH so that other test could be performed.

[morgan617]

I think we've all had every psych diagnoses known to man at one time or another. I could have checked all of the above and added a few.

My primary told me a few months ago that he had always believed I had a psych component to my illness. That day he apologized to me for ever thinking that and was wonderful. I have gone to him for 20 years. He always stood by me, but even he thought it for a long time. It just goes with the territory....morgan

[melly4]

Lynna,

I'm so sorry your son has had such a rough time. My son also has heart rates in the 130's when he's been on his feet any length of time. His BP goes all over the place, but when it gets low, he sometimes faints or else he feels like he's going to faint. The peds cardiologist he saw before we moved thought this was normal!! Yeah, right. My BP just stays low all the time and my heart rate goes from low to high upon standing. We're just counting down the days until our insurance kicks in here. Then I'm afraid of going through the whole "search for a sympathetic and knowledgable doctor" thing again. I found one for me before, but never for my son. The cardiologists and internists at the hospital system where we used to live would not see peds patients, and there was only one peds cardiologist!! So we were without hope there. Things look different down here in Georgia. My former internist told me not to mention anything about anxiety to new docs, even though we all know we do have anxiety from the wonderful episodes of tachy and heart palps!! I think he gave me great advice, though. I don't want to be tagged any longer with all my problems being attributed to anxiety. And then they'll say that my son's are anxiety,even though he's really laid back, because "anxiety is hereditary." Ha!!

[KathyP]

Hi Morgan;

You are so right!!! Dysautonomia is such an unknown disorder that most doctors are still learning about it. Most times they don't know what else to do but ask the psychology questions. When my doctor, whom I have a great deal of respect for, started figuring out my dysautonomia symptoms he asked a few psyc questions. I know he wasn't questioning my sanity. He was looking at all possible causes to make a correct diagnosis. But, there are unenlightened doctors out there who would just label it as a psychological problem and be done with it. Those looking for doctors must be knowledgable enough about dysautonomia themselves to know if a doctor is sensitive to it or not. Right now, in this day and age, Dysautonomia is a learning experience for both doctors and patients. So, "It does go with the territory"! You hit that one right on the head. This is why, as I stated before, educating yourself is the key to finding the right doctor and the best treatment for yourself.

Best wishes,

KathyP

[lthomas521]

Anxiety can activate the autonomic nervous system. But so can a lot of purely physiological states, such as hypovolemia, hypoglycemia, etc.

To assume that symptoms and signs related to activation of the autonomic nervous system are caused by anxiety or some other mental process is to commit a logical fallacy called affirming the consequent.

This is the form of the fallacy:

If A, then B.

B.

Therefore A.

I do not have an anxiety problem. I have an "insufficient blood in brain" problem. But it could be worse. I'm convinced that some of the physicians I've had to deal with have an "insufficient brain in head" problem.

[melly4]

For Ithomas521,

Can I quote you with the "some physicians have an insufficient brain in the head problem"? I'd love to say that to some of the docs that I've encountered that have charged me and my son with having anxiety as the only cause of our problems!! I like to call anxiety disorder the "lazy doctor's diagnosis".

[lthomas521]

Sure. You might even bring an elementary logic textbook with you to your next appointment, to make it easy to explain where they are being illogical.

Actually, that won't work. Never argue with an unreasonable person. Just take yourself out of their scope of action. If you can get away with it, refuse to pay the fee if you are given a ridiculous misdiagnosis. You clearly didn't receive the services you went in for.

[Dizzy Dame]

Ithomas, so witty (lol) !

I was also diagnosed with panic disorder, well, first the doctors though I was being "clumsy" when I starting falling down all the time. Then they saw my high heart rate and grabbed the "panic disorder" stamp. However, for me it was a grave misdiagnosis. The doctors put me on xanax (which can lower blood pressure). The first time I took it, my bp dropped so low that I couldn't even say my own name. The second time I took it I passed out, and the third time I took it I had an allergic reaction so severe that I had to spend the night in the ER . Fortunately I'm no longer on it and the doc's know that I have a "blood in the brain" problem. Still, it's infuriating!

- Lauren

[maryfw]

Over the 20 years that it took me to be diagnosed I have been told that my syptoms were from 1)depression 2)panic attacks and 3) got to love this one..........hyperventalating.............never bothered to go back to that doctor. I am not depressed, hyperventalating or having a panic attack. nice.

mary

[Maxine]

EGOS CAN BE A DANGEROUS THING...........

I THINK IT'S MORE LIKE------"FULL OF THIER OWN EGO DISEASE"----------

Maxine -----------

[morgan617]

I saw my muscular dystrophy doctor today. She said I am only 20% conversion disorder and 80% really sick. She is writing a letter for the ER saying that although I have psychosomatic problems, I really am sick.

Think that's going to help if I go there folks?......I give up....Now I 've percentages on how crazy I am...my life is complete and I can die happy....

[Mrs. Burschman]

Congrats, Morgan! I'm so happy you're (mostly) sane again!

Sheesh.

Amy

[Dawg Tired]

Literally - a page (okay - 2 pages!) out of my book!!

Dr A had said to come back in two weeks and here I was. He came through the door, sat at the small table and started flipping through my file. ?Well, Gayla, all of your tests seem to be normal, and I find that very reassuring.? There was that word again. ?And I think that we need to consider that your entire problem is depression or perhaps anxiety, those are common problems with women your age.?

Women MY age? Exactly what does that mean? He?s telling me this is all in my head!

I started crying. Here I was, nauseated, I would get short of breath turning over in bed, so exhausted I couldn?t sit upright and the dizziness had me staggering and falling all over the place like a drunk. Then there was the night thing; I would wake up clutching the edges of the mattress because I seemed to have ?bed spin?; the kind of bed spin you get when you are drunk, and here is a doctor telling me that these things happened at my age. I tried to think of all the women I had known that had passed the age of 43 and had these same problems. Hmm, nope, I couldn?t recall my mom or sisters, or aunts, or friends doing this. Not one.

He continued. ?I believe this outburst is just further proof that there really isn?t any physical problem. We can start some antidepressants for you and I?m sure that you will feel better very soon.?

I choked, ?I AM FRUSTRATED!!! NOT DEPRESSED!!!? I drew a deep breath and exhaled as slowly as possible. I closed my eyes and tried my best to settle down; obviously I wouldn?t get anywhere by poking the bear. ?Okay, if you aren?t finding anything, and you are so reassured, can you give me a referral to Mayo??

?Now, now, Mrs. Peterson, do you really think they are going to find anything? I don?t think your insurance company would appreciate us doing that. Even if they would consider covering such a thing.?

?Oh really? Well, I work for my insurance company and right now my case manager, who happens to be my boss, is wondering why YOU aren?t sending me to Mayo if YOU can?t help me.? It was true; Anna Sue and I had been discussing the fact that I needed to go to a larger facility.

Dr A seemed quite taken aback. I suppose no one had ever had an insurance company that really wanted things to work out. ?Come back and see me in about 10 days?. With that he turned to leave the room but I stopped him. ?Uh, Dr. A, does that mean when I?m 44 I will be over this?? He turned and looked at me for a few seconds then continued out the door.

We left the office and got in the car. I was still crying. Rick was at a loss. I told him to go to McDonalds and get me a cup of coffee. He parked and went in to get my coffee, bringing it back with 3 creams. I was still crying.

Yep... been there, done that, wrote a book.

I have concluded that some doctors think SO highly of themselves they don't want to admit when they don't know - so they manufacture something.

[morgan617]

Gad, I'm 53, I should have been over this 10 years ago!!!! According to your doc. I am still wondering how you can get percetages on mental and physical health. It has actually become a huge joke in my house and we all get the giggles over it....is this your 20% moment Deb, or your 80% moment????

[Dawg Tired]

We joke that I must "still" be 43!