****warning - Huge, Huge Venting Going On***

[Beccapooh]

Okay, so where to begin. I went to go see my Cardiologist today regarding my (supposed) DX of MVPS. Well, gee, I drove for the 45 minutes, burned a quarter of a tank of gas (no cheap matter these days) and paid my $30 copayment (for a specialist mind you) and only got to see her PA. Now, normally, this wouldn't be an issue (I suppose), however, the appointment was SUPPOSED to be to review my echo (actually look at it!!) and start me on a treatment plan. Well the PA walks in with a little plastic board with a picture of a heart on it, directs my attention to the Mitral Valve and says "This is were your prolapse is. Do you know what "prolapse" means?" I, of course, say yes and she continues with, "Okay, do you have anymore questions?"

Ummm, wha??? We were done. (According to her, we were, I thought differently) That was it, the entire appointment??

So, I of course, said, "Yes, I do." I went on to explain about MVPS and that it was also called Dysautonomia, etc. I spent the next 45 minutes educating her and being told that I needed to see a Neurologist (even though I've been seeing a Neurologist off and on for 16 years now! ) because she thinks that I have MS and/or absence (spelling?) seizures. Okay, well, let's see, I've done about 27 MRI's (exaggeration) most with contrast even though I have a horrible reaction to it. I've also done the 48 hour EEG thing, where I wore the electodes on my head and freaked out all the neighborhood children. Nada. Well, except for the T2 lesions and an abnomality of the anterior horns, which was never followed up on at all. I was told hat I had six lesions and to have MS, I needed 9. Whatever. Anyway, suffices to say, I don't have MS or these weird "asbence" seizures. I have freakin' DYSAUTONOMIA you stupid *&%$@!!!!

I have 18 years of records pointing in that direction. I asked her if she'd order me a 24 hour urine or the Cateclomine (however you spell it) test and a colagin (again spelling's off) test. I've got a sneaky feeling that I have Hyper adrenic Dysautonomia and Vascular EDS. These two tests will conclusively (kinda) tell me if I'm right or not. She told me no. She told me to go see a Rheumotologist and an Adrenal guy. Okay, well let's see I've been to every freakin' other "ologist" why not add two more, huh?? Or hey, maybe you could actually help me out and save me the time and money and just order the tests? Nope. Point blank.

Then she went on to say that IF I did have an "adrenal" problem that that would explain my weight gain. What weight gain? I've been fat since I gave birth to my first child 8 1/2 years ago. I know that I'm fat. I've weighted within 6 lbs of the same weight for almost nine years. (Except for when I was pregnant with the second baby, of course!!). So, now, again, I'm being told that I'm ill because I'm fat. Okay. Whatever.

Then she continues to say that if I'm not having absence seizures and since she "KNOWS THAT I DON'T HAVE POTS......" (even with a 28 beats per minute increase in HR) that I must be a very good actress!!! Okay, at this point, I want to hit her, but I think, no..........just wait, the wonderful, kind hearted cardiologist will come in any second and save me.

She's getting ready to dismiss me without any drugs, nothing. So, I pretty much demand at least Beta Blockers, which she gave me "if it would make me happy." she said. Nice. Don't do me any favors, okay??!!! And as she leaves she tells me to get dressed. No EKG, no seeing my echo and no cardiologist. I'm thinking, okay, I'll get dressed and wait for my doc. So I waited for 20 minutes and then the nurse comes and knocks and the door to see if I'm okay. She says to me "we're ready to check you out now." Oh, really? When was I checked in, huh???

So I get my script for the Beta Blockers, something with T, I don't even remember right now, some XL thing that I'm to take a night and a standing order for antobiotics for when I have surgery, dental work, etc.

So over the course of this appointment, I was told that MVPS doesn't exist (she'd never heard of it, so it must not be real, kinda thing), that I'm too fat to be sick, and that I'm a good actress!! Well, y'all say hello THE FAT ACTRESS.

I'm going to go shoot myself now!!!!!!!!!!!! (Not really, but, I'm so upset I can't even see straight, no really, I can't see straight.................ARGH!!!)

Bec

[taylortotmom]

Uggghhh, I'm so sorry! The T and XL is probably Toprol XL which I was on for years for my dysatuonomia sxs- so that's a good thing. There are "ologists" unfamiliar with dysautonomia so it is not unexpected a PA would not be familiar with the disorder. Your doctor should have seen you however, and answered any questions you have- or she could have a least called you if necessary. I would let my doctor know about my disapoointment and ask her the best way to ensure seeing her on your appoinments- you have the right to see who you want and not be turned over to a PA. If she is not willing to comply, then find another cardiologist. I know it is hard, hang in there.

Carmen

[DSM3KIDZ]

Words can't even begin to explain what a ***** this lady is. I am so so sorry that you had to experience this. I can only imagine how frustrated you must be feeling and you have every right to be!!!

I don't even know what to say except doctors are soooooooooooooo FRUSTRATING!!!!!

Do you have a punching bag?

Dayna

[Dizzy Dame]

Rebecca, it sounds like you need to get a new doctor. I'd highly reccomend getting a referral to Vanderbilt or Mayo for a proper autonomic workup. There you can get the catecholamine tests, blood-volume, TTT, you name it. I've been to Vanderbilt, not Mayo, and had a good experience. I've posted a link below that talks about my time there.

http://dinet.ipbhost.com/index.php?showtopic=4554&hl=

I really thing something like that would help you immensley!

[BEE]

Rebecca..I am so sorry your appt. was cruddy. To say the least.. Get into someone who is familiar with dysautonomia and POTS please..We know your not an actress and remember this nurse gets to go home to her family and forget all about this..YOu unfortunately do not!! So sometimes you gotta be your own advocate when it comes to the medical field..if possible find someone else..Okay?? I am just sorry you had to deal with incompetent care..

Bee

[futurehope]

I found that it helped when making my appointment to ask the receptionist if the doctor treats neurally mediated hypotension? If they answer "yes", then you at least get a doctor that has a clue.

Obviously, your doctor was unfamiliar with the POTS part of MVPS.

I'm sorry you expectations were dashed.

[cardiactec]

hey bec,

i am so sorry to hear that the appointment went over so horribly. first off, ignore the PA's comments of you being an actress. how rude of her. terrible. second, i would DEMAND to see your cardio or find yourself another one. third, there IS such a thing at MVPS and anyone who denies it, you should pay no attention to because they are ignorant for ignoring their patients and their symptoms. the PA most likely prescribed you toprol xl, it is the long acting beta, good for palps, tachy, tremor..........take it and try to look past the PA's understand of giving it to you just to "make you happy", the toprol will most likely make you feel better. i would follow up with your cardio (either give her/his office a call tomorrow and demand to see t he cardio and NOT THE PA, or i would look into seeing another cardiologist).........

as for the 24 catecholamine test, the cardiologist can order that test and the PA's idea to send you to a specialist in adrenal disorders is ridiculous. that is a very simple test to order. you get a jug and pee in it for 24 hours. it's that simple. geez, if the PA needs you to go to another doc for that test, she is LAZY! hardly involves any work on her part. or yours! man......

i hope you get to see someone that understands MVPS/dysautonomia. there ARE docs that acknowledge it, and i truly wouldnt believe MOST PA's to understand and be educated in the dynamic pathologic and physiologic components of dysautonomia, especially a PA that assists a cardiologist........perhaps if she was a PA to a neurologist it would be a different story.

dont give up. i know it is frustrating....

[Guest dionna]

i just wanted to say that i am sorry you are being treated that way. it is not fair. and for the actress thing... well if you are that good you might as well go on to hollywood. make some big money. lol. that is what i told some of my docs i was going to do. take care of yourself okay.

dionna

[mom4cem]

Well that was a flipping waste of time!.. So sorry you were treated like that... I know that feeling. The only real aknowledgement I have ever received I had to drive over 10 hours to get to at the center in Alabama. That ain't no small drive to make so that is not done very often. Many doctors don't want to be educated on dysautonomia so forget about their PA's , there usually on the same level of thinking.

From what I gather you have felt out the local doctors so you know who knows what or who does not know anything Unfortunately, much of the time we have to be assertive and research and get as much info as we can and try to self help as much as we can until we can find someone willing to listen and help.

That was pretty stinky that the cardio did not even come in. I would make sure the next time I go see one, that I tell them in advance I want to be seen by the dr., not the nurse or the pa. Unfortunately, there was no way for you to know about being seen only by a pa ahead of time.

I requested from my dr the catecholamine 24hr urine and plasma test. He did that without a problem. I saw an endocrinologist who was of not much help either. When I explained my situation and then saw my blood work results, she only checked for the usual thyroid levels/hormonal levels. Never suggested a 24hr urine or anything like that.

It's so frustrating. Try the toprol xl, it just might help. Just because you don't have the 30bpm increase does not mean you don't have dysautonomia.

P.S.,,,then I guess they better have an awards ceremony and tons of awards to give out. So many of us "actresses" out there, it's a wonder that Hollywood has not picked some of us up!

[bttrflyamby1981]

Hi Bec,

I'm soooo sorry about how you were treated!!!!!!!!!!!!!

It was wrong and I'm so upset with these doctors, nurses, NP's whatever you call them. There is way to many of them out there who just don't care about the person they are treating, we are numbers and $ to them.

As I say that, I know their are also ones who do care. So my wish for you is to find one.

Hang in there and know I'm here for you if you need anything.

(((((hugs)))))

Amber

[dizzygirl]

rebecca

I am SOOOOOOOOOOsorry for your wacked out pa appointment!

there are some good docs out there (and pa's and np's) who do care and are more concerned with the patient the the dollar sign.. I do hope that you find a good doc to treat you and take you seriously soon so that you can start proper treatment..

the whole load og crud about being agood actress and being fat is truly unethical and so uncalled for! not to mention unprofessional!

GRRRRRRRRRRRRRRR! I too am "fat" but my weigh gain didnt start until "after" dysautonomia really started kicking me in the buttt. then hello i went from twiggy to a fluffy women!

docs used to give me that you are heavy and its causing your problems.. I actually told one MD to bite me.. that there are folks who have pots who are skinny as a rail.. and still have symptoms to the same severity.. despite there weight! I havent got the you fat comment since!

again I'm so sorry that you have a worthless appointment I really hopw that you find adquete caresoon

good luck dear

[ariella]

Rebecca,

sorry about the horrible experience. It's bad enough when we have to educate our doctors through things we've picked up on the internet, but to even suggest you're an actress is unprofessional (that's the nicest word I can think of right now) Hey, if she was a male she would probably blame your ailments on being born female and therefore high strung.

Maybe it's worth lodging a complaint with the doctor? Is this the same doctor who was supportive in the past?

I dislike people who don't know how to say they don't know.

Ariella

[purplefocus]

Hi, I'm so sorry you had to deal with this uninformed person. The medical staff makes me so angry when they are so hardheaded and just trying to get you out of the door. I am a nurse myself and I never jumped to conclusions or if I had my suspicions about someone I kept it to myself. You need to find another doctor. They are out there, you just have to weed out the bad ones. I worked with so many doctors and nurses in the past that I really wondered where they got there licenses.......I don't think some of them came from any college. It was scary. I got the actress award also, I was so good that I even passed out and pulled down the IV pole with me, ripping the IV catheter out of my hand.......I think I should have got an Oscar since the nurse said I was faking. I think most of us here have been thru this and you just have to keep looking. You will find one that knows and understand and will be able to help you. I have an excellent dysautonomia doctor but it took awhile to find her. Good luck.

Paige

[Beccapooh]

And I forgot one thing...........Y'all are gonna love this one. I had told her about all the information that I've got from the web, ie. this forum and other sites about MVPS and Dysautonomia and she told me that she too "could go online and make herself fit into many categories, that didn't mean that she had any of the diseases!!!"

I've had these symptoms since long before anyone had ever heard of the internet. To be honest, I've had tons of them since I was born, namely the extreme sensitivity to light and sound!!!

I think that that was my favorite quote of hers, to be quite honest.

Thanks everyone for being so supportive, I don't know what I'd do without y'all, truly!!!

Hey, I do have a question, too. I just took my first dose of Toprol XL last night before I went to bed (as instructed by the Wicked Witch of the East) and I could NOT sleep. I feel better, like my blurred vision went away (which was so nice....I could actually see again!!) but when I went to lay down I felt like I just had to move. After the day that I had, my brain was tired, but it was like my body was ready dance or something. Is this common and will it go away? Am I nuts? (LOL) Or could this just be more support that I'm a hyper-adrenic person? (If felt somewhat like that.........like my dystonic reaction to Compazine, just not AS severe)

Anyway, thanks again y'all!!

Kisses and hugs to everyone!!!

Bec

[Lukkychrm42]

If they realize you have MVPS but won't admit to a label such as "Dysautonomia," obviously you don't want to be dealing with these people, but there is a book written and still in print called the Mitral Valve Prolapse Syndrome/ Dysautonomia Survival Guide. It would be good for you to have, yourself, but maybe if she saw something in print that didn't come from the web, she will be willing to concede. Not that you want to have a relationship with her, but maybe she'll admit to herself, if no one else, and at least stop telling that to other people.

I'm so sorry you've had to deal with a person like that. There really are lots of people out there who should NOT be allowed to go into medicine. Maybe you posted this elsewhere, but have you gotten to speak to the actual cardio yet?

It usually takes a few weeks to become adjusted to beta blockers and for them to take real effect, but some people have stronger reactions and sensitivities to them than others. I never noticed them (including Toprol) distrupting my sleep specifically, but I do have strange dreams since starting them. Also, if my heart is beating faster than usual, I can't relax and go to sleep, so BBs help that for me.

Just out of curiosity, if you have dysautonomia due to the MVP, then I don't THINK it's likely to be from genetic issue causing TRUE hyperadrenergic POTS, am I right? However, you could have the so-called secondary hyper type, like I'm called, which really needs a new name because although it is a really exaggerated adrenal response, is caused by something besides norepi spillover from that genetic defect. The treatment of the 2 often differ.

I also don't think that the specialty dysaut. tests are often done except by those doing research or with LOTS of dysaut. patients. Mostly because the tests are often really expensive and it takes a long time to get the results from, and while it's helpful to know ideas of numbers at some point and if there are other issues at stake, the specialists I've seen kind of treat more by instinct- so they can tell what's going on with you by looking, getting a feel for your symptoms, and performing simpler tests. SO I'd also recommend that you go to see a specialist when and if you can afford and manage the trip and the time.

Good luck!!!

[Beccapooh]

I still haven't had a chance to talk to the actual Cardio. As a matter of fact, the lovely PA that attacked me so viciously yesterday is the one who called me back. Even though I specifically said that I DID NOT WANT TO SPEAK TO HER!!!

That's the whole point of my concern, I took the BB and it's what made me feel like I wanted to run around and made me feel all adrenally (is that even a word??? LOL). And if it's really supposed to be lowering my heart rate, then obviously there's a problem. Now, I'm terrified to take it again!!!

Now, I know that even in the Hyper-adrenic version of Dysautonomia there are two sub types, congenital and secondary, but what are the two different tests? I had no idea that there would be separate tests for each. Isn't it just the plamsa and/or 24 urine to measure your level of that chemical (Catheclomine) or whatever it is??

I guess, what I need is a crash course in all this stuff, because I'm going to have to educate my Primary Care and Neurologist, because they're going to have to treat me (and obviously are going to want proof prior to any treatment) and they don't know s*%t about any of this.

I always have been super sensitive to drugs, light, sound, heat, exercise, movement, on and on and on. I, think that it's the congenital type, but, then again I can't afford a DNA test to prove that you know? So, am I gonna be screwed? Will the 24 hour urine and or blood test not come out right for me, then?

HELP!!!! I feel quite confused now.

In addition to all this, I also believe that I have vascular EDS, which now I'm being told needs some sort of crazy genetic test, too. This all has to be a joke. Seriously. My poor husband and my family and friends and my pocket book can't take much more. Why is it that everyone else, seems to have someone in a nearby state (at least) that knows something about something.......but, NO, not here in Colorado!!!

I'm feeling quite sorry for myself. I'm sorry. I'm just super upset that what I thought was going to be a for sure DX has now turned into this mess.

The PA (of the Cardiologist) told me that the Cardio is only willing to treat my MVP, that's it. She doesn't even want to try to work me up for the Dysautonomia. I need to go back to my Neuro or see a Endocrinologist or something else, but she doesn't want to see me unless it's for my MVP, period. Nice, huh?

I want to cry....................and sleep!!!!!!!!!! sniff, sniff

Bec

[mom4cem]

About the beta blocker. Did you notice your heartrate? Was it fast or at a nice steady pace?

I ask this because I know there are still many days when I feel wired, but tired, even on the beta and I can feel like this and my heartrate is fine. The beta can help to lower the rate and sometimes it helps people with anxiety, but I am guessing because it specifically slows the heartrate from the anxiety one is feeling but it does not acutally stop or cure the anxiety? Make any sense?

You can still be having adrenaline surges/dysautonomia surges whatever, even though the beta may be doing it's job. Many times I feel like my heart wants to race, but the beta keeps it even, so I know the adrenaline is still pumping, that the nervous system is still out of whack.

I probably said this before but I break mine up in the a.m. and p.m. But you are on the xl and I don't think you can do that with that particular one, but I could be wrong.

Hope you get some sleep tonight and be good to yourself

[sally]

Rebecca,

I'm so sorry you are having such a difficult time with this doc. I would be upset as well seeing another physician than who I expected to see without some explanation given to me.

I think when a person is ill and is seeking to not only get help & answers (dx) from physician, it can make you feel like your in a whirlwind and not know which end is up or down or what to believe.

My suggestion to you is step back for a few days and take a breather and rest your mind with things then you'll be more refreshed. Then seek out the doctors who deal with dysautonomia & eds only and see them if possible for a diagnosis. At least you'll know one way or another and then after your diagnoses from a specialist who deals in these disorders you can go from there to provide the local physician or cardo the proof you need and information for your treatment provided from the specialist of dysautonomia or EDS.

Personally, I would not see any cardio or expect treatment from them for something they do not know anything about, all it is going to do is frustrate you especially if they don't understand what they are treating in the first place and give you medication just to get you out the door. that's bad doctoring in my book. Plus I would have asked this person why do they think that you do not have this disorder and let them explain it to you the reasons why not.

Believe me, I know what you going through and what you are feeling with this. I understand the expense of seeking outside specialist of your state but it maybe something you may have to do to get answers. Even if you spend extra to see a good one, think of the money you'll save by not wasting it on other docs who don't understand time after time. If you think you have EDS I would suggest seeing a genetics doc who deals with EDS or marfans. We have been where you are and it can be very frustrating until you find just the right one to help you. have you tried to call the NIH to see if they can advise you on a physicians name for these disorders for diagnosing? A knowledgable cardio can diagnose this blood pressure disorder as well via the TTT especially one who has a electrophysiologist on staff.

I wish you all the best and take care.

[ellen]

Rebecca,

I'm so sorry you have had to put up with that kind of treatment. I have found when I have someone with me during the appointment (it's rare), I get more respect. I always go with my husband to his appointments, and the doctors treat him like a prince.

Maybe if you can get someone to accompany you to your doctor visit, that PA will change her attitude. First of all, she won't speak so roughly in front of a witness. And she may take you seriously when she sees that someone else does.