dr from last year still thinks it's anxiety!

[persephone]

I am SO angry and upset- my complaint letter to the trust was 11 pages long, and my arguments were irrefutable I said that I wanted my notes changed so that they could be accurate.

but this muppet of a neurologist in Scotland is refusing to change his mind and concede tha tI have anything other than panic disorder. He gets out of the POTs thing by saying that some of the clinical traits are the same.

I feel so mad- how can this guy argue with FOUR cardiologists and a world authority on POTS?!?!?!

anyway, the up-shot is, while this mo-mo refuses to change his mind, I can't change my records so I'll be written off as a crackpot!

Apparently, I can't even say the hospital have been unreasonable because they were prepared to refer me to someone else--yeah, a NEUROPSYCHIATRIST!!! Cos that really helps with POTS, hmmmm.

SO ANGRY!!!!!!!

any advice? Other than throw the guy from a fifth floor window?!

I am NOT CRAZY....I may be mad right now, but I'm not NUTS

[Poohbear]

How awful!!!! I wish I had some great way to resolve the issue for you!

I don't know if this is an option for you or not but I had a relatively minor issue with some Dr's thinking my condition was anxiety or panic or some other type of psychological problem. So....I went to a psychologist and explained everything, took the research I had done on Dysautonomia to them and the PSYCHOLOGIST wrote a note for my permanent record stating that while I do have some symptoms of panic, anxiety, depression etc., that these things were clearly due to a physical condition and were secondary to the Dysautonomia.

This has helped a lot for me because the Dr's see where their "throw away" diagnosis of panic or anxiety is thrown right back at them and they are told by a Psychologist/psychiatrist that they are wrong.

If you got a decent neuropsychiatrist who would really listen to you that could turn out to be your best advocate because they would understand the connection between the two (panic/anxiety and POTS) but they would also be able to attest that it's secondary to a physical condition. The problem is finding a good neuropsychiatrist.

It's totally justified and understandable that you feel so angry!!

[melly4]

I am so sorry that you are going through this. It's simply ignorance. I had a GP who insisted that I had an anxiety disorder, even though he saw the abnormal EKG's in his office and that none of the anxiety meds helped me, only made me worse. In fact, I ended up in the ER because of an SSRI. But he still insisted, and sent me to a psychiatrist. But, luckily, the psychiatrist didn't believe for one minute that I had an anxiety disorder even though I had anxiety caused by the other symptoms I was having. This psychiatrist advised me to find another primary care physician, and that's just what I did. And the internist I ended up with advised me to never bring up anxiety when dealing with health issues, because he said it was an invasion of privacy and would be a cause for other docs to overlook serious problems not anxiety-related, such as what happened to me when I had gallstones. My GP had told me that it was anxiety-induced reflux. Two months later I was in the hospital having my gallbladder removed, and just in time!!

Is it possible to remove the "crackpot" doctor from your care team? Perhaps doctors with more experience with POTS will realize that this doc's diagnosis is incorrect, look past it, and send you in the right direction. I hope this gets better for you. How frustrating!!

[MightyMouse]

I'm a bit woozy and overtired...but my first thought is can you get a legal representative (have any lawyer friends?) write a letter on your behalf, again requesting strongly that the anxiety diagnosis be formally removed from your records. I suppose you can also file a complaint with whatever agency oversees physician's in your country or province. Last case scenario, contact your local government representative for help and/or file charges for libel and/or medical negligence with regard to your care. I know that's a strong step to take, but if you can't get action, you have a right to make sure the records of your health are accurate.

Nina

[Guest Finrussak]

I agree with all of the suggestions, but most of all to entertain the possibility of getting that neuropsych eval...IF its paid for by the system. BUT first try to find out if you have a choice as to whom to go to and try to phone first to see their relative knowledge of physical illnesses that masquerade as or are mistaken as anxiety disorders.

Once I "gave in" and got the neuropsych...the woman doing it put me thru a battery of cognitive and physical tests and annoying questions ( it took a total of 8 hrs over 5 days) but in the end HER final report was my salvation!!! She concluded that while I have "symptoms that are similar to and even the same as anxiety" , that I have a physiological illness causing these symptoms and that I am "coping well" and "within normal expected limits"...not overreacting, etc... HAH to all those pill pushing " oh you have 3 kids, going to university, teaching, you MUST be stressed and you MUST be having panic and/or anxiety attacks" spouting know-it-alls!!

She also explained to me that the symptoms can be the SAME and caused by the same chemicals...causing the confusion. In other words, if someone gave you an epipen injection of adrenaline, youd manifest anxiety symptoms...sweats, tachy, shakes etc etc. If your dysauto causes adrenalin surges, then the symptoms would again mimic anxiety.Plus many chemicals share reactions...like a norepi surge will have the body shooting epi to compensate...and dopamine can wreak havoc...

Problems arise when doctors are trained to categorize lists of symptoms...like the list above would have to be called "anxiety" or "anxiety like sx"...regardless of whether physiological or iatrogenic ( like from the epipen...'doctor/medically caused') or psychological ( true anxiety) or even idiopathic (unknown cause)

BUT a good neuropsych can sort it out on paper and refute better than any lawyer can. Im not familiar with your country's laws but here In US I have tried to get my own records changed ( wrong meds, wrong reactions written ,,,can be deadly next time) yet all I was allowed to do was add a "personal account rebuttal"...which for some next Dr. reading it means " some nut not likes what her Dr said"...

Apparently you cant force them to change whats wrong even beyond "opinion"...what I now do is carefully review EVERY record then only pass along the right ones...I even occassionally request copies from my good docs of chart notes...they are human and I find the occassional odd error there too...only with them theyre happy to amend!! ( its not paranoia if theyre actually following you!!)

Good luck and I feel your frustration

I was just post delivery with baby # 3 [16 yrs ago this past Saturday]...lots of very bad Sx and hearing the 'post partum depression panic diagnosis'...I finally took my shrink by his NECK ( he was about to phone the police!!!) and demanded to see HIS own doctor...he said fine to PROVE to me I wasnt really ill physically...and that Dr god bless his soul...LISTENED and diagnosed LYME and 2 other tick bornes...by then the damage to my heart and nervous system was done...years later this worsened to the dysauto stuff..

So I know from frustration!!!!

shouldve choked the shrink when I had the chance, right??

Good luck...you have EVERY right to be mad but it pumps chemistry your body really doesnt need to deal with...these dummies with MDs arent worth it!!!

[persephone]

thanks guys! I should point out that this guy has had nothing to do with my diagnosis and treatment of POTS. because it was after he told me I was nuts that I found a Dr who lknew about POTS off my own back--he may have inadvertently done me a favour.

But as I'm always saying- it's the PRINCIPLE of the thing. And for him to continue to stand by his diagnosis, in spite of the fact that no less than 5 cardiologists since then, and a further team of neurologists have said htat I'm not mad, I just have POTS!!!!

thanks for listening :-)

[EarthMother]

I like the lawyer suggestion from MM. Toss around defimation of character ... harrassment ... gross neglegence.

POTS = I stand up my heart rate goes up ... I lie down it comes down.

ANXIETY = I walk into incompetent doctor's office and my heart rate goes up and I vomit on his shoes.

What's so hard to discern?

EM

[Guest Julia59]

Persephone,

Ick--that guy sounds like a real winner----not---------

I just wanted to throw some support your way and wish you well.

This Doc apparently does not know much about the ANS and how it can mess up our body. YES----many times we will have spells that look very much like anxiety or panic attacks, but it's from a physiological cause.

I can't tell you how many different medical articles and journals I have read about the various forms of dysautonomia that point out that the anxiety/and panic type feelings are manifested from the malfunctioning ANS.

I'M SO SICK OF THE IGNORANCE!

Sending you a big hug------------>

Julie :0)

[persephone]

Julie and EM---thankyou SO much! you make me smile

Cos you are AWESOME!

Anyone want to join me in beating the guy to death with his own shoes?!

Or maybe leaving him on a tilt table for a WEEK, til his hear tcan't take it anymore, and sasying "Oh dear, looks like you have PANIC DISORDER there, buddy!"

hahahahaha!

[lthomas521]

The only thing that I know of that can reliably induce POTS in an otherwise healthy person is prolonged space flight. If a doctor is insisting that we are otherwise healthy, does that mean he thinks we are astronauts?

Houston, we have a problem.

[persephone]

Lthomas251, I dunno who you are but your posts are always hilarious! you should be on the stage!!!!

WAs it not you who posted stuff about personality disorder in doctors before?

VERY CLEVER!

You should write a column here every week to keep us all smiling:-)

[Guest Julia59]

How about a little isoproternol for our little doctor wanna be.

Let him have a little taste of what we go through---------->he'll go running into the night crying like a little girl. Then he can go into the ER---and all the medical staff can stare at him with looks on their faces like Forrest Gump. Then some doctor who is as dumb as a rock will come in and tell him to "RELAX-----you have too much anxiety."

Julie :0)

[persephone]

:D:D