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Hmmm.. Should I Or Shouldnt I??

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Hi folks.. I am wondering.. today in the mail I recieved a huge stack of medical records from the state and treating doc that i had ebfore I moved to PA.

I was reading thru the recods and while it truly shows my BP all over the map and my heart rates up and down like a yo-yo..some bp readings where 160/122 160/112.--191/120 and pulses ranging from 60 to 200.. now i think that that is something worth showing to a doc..

however in just about every office visti and every sheet of paper it talks about mental illness.. I'm not mentally ill in any way shape or form) and people who really know me.. know that I'm not mentally nuts... I'm pretty level headed and calm..

But it talks about how my heart rate and BP's are more of a result of mental or psychological affects.. as the same for the excuiiating pain that i suffer from daily...I'm sorry but this isnt psycho-somatic!!

They insisted that this was psycho-somatic.. a few times even after seing my HR in the 200 range (in 2002 before i was diagnosed with pots).. and even sent me to a psych ward during one Er trip b/c my HR and BP would not come down depsite the fact that they where pumping me full of fluids... (they psychiatrist deemed me as mentally stable by the way with no mental illness! ) and she reemed the ER doc a new booty hole for sending me to a locked psych unit.. when I need to be kept in the ER.. only then did they call in the emergency neuro consult! GRRRRRRRRR sory brief rant there!

they just couoldnt undersand these docs back home why my heart rate would go so high when I'd sit up or stand.. HELLOOOOOOOOOOOOOOOOOO!!!!!!!!!!

They also put in my reords that I was non-compliant with them regarding psychological and psychiatric care... b/c I knew I wasnt mentally wacked out!! that is why!!...).. but i refused to go to these kind of doctors and go on psych drugs... and I sought out pastoral counseling instead..

I dont want to over step on the religion front.. But when I got really sick in 2002.. it turned my life upside down.. ( as I'm sure with everybody here) ... and I had quite a few traumatic events happen to me/in my life.. and I decided tot ake a different approach in dealing with the blows and changes that life was giving me..

I went to pastor counseling.. and I worked with a pastoral counselor who dealt with ppl who where sick and dying (i'm not dying.. but that was waht he dealt with).. anywho I just need a spirtual guidance... and needed tot ake a different approach to things... pastoral care worked out great for me.. that is what I needed at that particular time.. the pastor would pray with befoe and after each session.. that we would find the cause behind waht was making me sick... and about 2 months later I got diagnosed.. call it persistance on my part or divine intervention..

sorry i'm rambling here...

the records just upset me... as I'm not a looney bird.. and I'm afraid that If I sned these records to vandy or any other facilty that they are going to think I'm a real nut job... yet on the other hand there is alot of valuable information there.. things that make sense now that i know what was happening..

Like the severe headaches.. I now know that its neck/pots realted.. the visual things.. pots related.. the cognitive.. not ebing able to pay attention or focus or just being kind of dense and "incoherant" on ocasions that is this not so lovely pots.. and those so call anxiety or panic attacks they thought I was having.. they arent panic attacks.. not in the true sense of panic attacks.. they are adrenaline surges!!

and that the funny noises i hear in my head hello its not (buzzing humming.. high pitched sounds) schizophrenia!... its potsy too!!!!!!


what do you think folks.. should I just leave them out of the mix of things? or maybe send them along.. and attach a letter saying that I wasnt yet diagnosed yet?

I've been misdiagnosed so many times.. at one point a shrink thought i was bi-polar..b/c i was telling her of some of my potsy sysmptoms which she construed as manic cycling!! needless to say she was very wrong!! my PCP set the record straight on that!

it just scares me you know not only for myself but for people in general that dcotros and mental health professionals are lableing people with all these mental health problems.. based on things that are more medical the psychological

pure and simple... I'm not a nut bag!

sorr folks..this kinda turned into a vent! I meant to ask a question it being:

opinions needed on sending these records please!!!

thank you~

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I agree with Ernie or you could request that your fomer physician send only the BP readings and other specific info you want sent. They do not need to send entire notes. Anything in relation to the implied psych hx would be considered sensitive information, so you would have to send it yourself or sign to specifically have that info sent to another provider. That is my understanding anyway.

I have found many errors in my chart regarding hx, from saying I drink- haven't in over 13 years, had a c-section-think I would have remembered that, and also have experienced the implied anxiety, psych questions. I am sure most of us have with this illness. Yes, I have also requested that letter of my disagreement with diagnosis be included in records.:)

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I also agree with the others. I wouldn't send any notes that have the mental health stuff in them. Just because you don't want the docs to already form an opinion by the notes they have, instead of forming an opinion after they see you!


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You might make a chart of blood pressures and heart rate readings with dates and readings. This way the new docs could see at a glance the range and they would not see the notes re psych. Also any records that do not mention the psych stuff would be good to send. If you have test results or procedure reports, these should not make mention of your mental state. These might include EKG results, blood test results, stress tests, any kind of reports that just state the facts.

I would definitely pick and choose and I certainly would not request the current doc to send records.

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thanks folks !!

that is a good idea to make a list of the BP reading and HR and stuff like that.. GOOD IDEA!!!!!!!!!

Nadine--yes I have a fw things in my old chart that I would consider WRONG!!!.. Like Big time.. Ugh!!

I needed to vent.. as these "records" made me angry.. goodness!!!

i really do not have a psychological or psychiatric problem!!! I feel I have to defend myself there.. even though I know that you all understand and have been there done that!

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Guest Julia59

Hi Linda!

I would avoid sending anything pertaining to mental illness. I know TCI would make up their own minds----they are used to seeing mental diagnoses, conversion disorder ect. as the choice of diagnosis on many occasions with chiair/chiari related conditions---including POTS---and ANS dysfunction. However, I would talk with them in person about it before they would see anything in the medical file pertaining to any type of mental disorder which of course was "misdiagnosed". Just send things that are pertinent to what they will be seeing you for.

Dr. Heffez said it was tragic that I went so long without a proper diagnosis for such a long time, as further damage to my ANS/CNS could have been prevented. I was considered as being "DRAMATIC" by many physicians and also physical therapists. By the time they got done with me---I was convinced that I WAS---"DRAMATIC". This is why I just considered that it must not be that serious, and this is something I'll have to live with-------UNTIL I CRASHED IN 2000-------------THEN THE "DRAMATICS" was turned on the doctors.

I have seen you on several occasions, and I consider you to be a very stable person------"MENTALLY"----especially considering what you have been through. However, your health physiologically--(physical) is not stable, and you deserve the best possible chance of getting well again. What these nimrod doctors don't get is that if they are wrong in diagnosing "A MENTAL DISORDER", and the person has permanant damage to their physical well being-----they could be held accountable-----------IN OTHER WORDS---SUED......... :lol: So it is important to have the "mental diagnosis" at hand for furture reference---just in case you would like to see some of these fools to be held accountable for thier folly.

POTS. Chiari/Chiari related illness, not so much EDS------are not considered "real" illnesses by an overwhelming amount of medical professionals----so unfortunately even the physicians who work so hard to help us can be considered to be nuts themselves. An example of this is when a person goes to a hospital ER via orders of their ANS physician------and then the staff treats the patient as a malingerer/or nut ball case despite the ANS physicians specific orders to treat the patient for thier ANS symptoms. I have even seen one crazy ER Doc (let's call him Dr. Mullit) switch gears from psyco babble----to spiritual babble in less then 5 seconds to suit his undying need to feel superior. In essence---they are implying the ANS doctor is nuts too....... :lol:.

Basically----we are in for one heck of a battle to get this illness on the MAP----because on certain occasions, some of the ANS specialisits are not taken seriously for thier hard work and dedication in helping people with dysautonomia/chiari & chiari related conditions. My dears----we all know the seriousness of these disorders, and it's shameful that so many medical professionals don't.

Linda, if you ever need someone to vouch for your character----I will be happy to do it, but be wary, I have been considered "NUTS" on a few occasions myself----------- :)

Sorry to go a little off track----but I'm sick of seeing people with these disorders pushed around---and not getting the proper medical treatment----thus loosing precious moments in thier lives.


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here here julie!!

I have a serious bone to pick with that dr. mullet!.. stupid ding a ling

But have no fear julie.. your schizophrenic-bio-polar-manic depressive-anxiety rittled dizzygirl is "here to save the day" (imagine me saying that in a singy songy voice..lol hahah..scary thought!!me singing.. i might shtter some glass with that lol! :lol: ) and set some folks straight (doctors) and light some fires under some booty's! 9doctors and nurse's and what not)

But yeah I decided that I'm going to do waht Jan suggested and chart the vitals.. and the symptoms.. as i think it important to see.. at the time for some of the way high BP"S.. i ws only 19.. a girl of 19 should not have a bp of 195/145... I'm sorry but i dontbelieve that any amount of stress or "supposide mental" disorder can cause a BP like over and over... and a I never heard of a mental health disorder cause such intense pressure in the head and brain either...

So these Dr. mullet cracker jack box docs really need to get educated on the true ligitamacy of the serious natuire of dysautonomia.. chiari.. or any disorder that is considered "rare" or invisible" and take into account that just b/c they dont know what is wrong doesnt not mean that the pateint is amental health patient... or what they are expereincing is "psychosomatic" b/c they cant find a cause!!!! HELLLLLLLOOOOOO Huston we have a aproblem!

sorry i ramled a bit...but no i dont plan on mailing these to anyone...

thanks julie :)

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Lets not forget that the doctors themselves that are pronouncing judgement upon their own, might not be the most mentally stable. They also are susuceptible to mental illness, malingering, drug dependency etc.

Medical professionals in general, seem to be too quick to pass judgement without considering all the puzzle pieces.

Sorry you have had to deal with so many "dramatic" labels before being taken seriously. Been there.


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