Another Great Appt.

[morgan617]

As some of you know, I have a pacemaker. It is set to record sustained or long runs of v-tach at 180 or greater.

Two weeks ago, I had to go to ER by ambulance because of some arrythmia I did not tolerate at all. In fact, hubs had to call an ambulance. By the time they got here, it had passed of course, although I had lain here and tried to deal with it for over an hour.

I had conversion disorder, of course. I had 80 meq of potassium before I went to the ER and it was 3.7. They gave me 50 more orally and 1000cc IV with more in it. I was still so weak, I couldn't walk, they never ran another K+ level and I got a psychogenic diagnosis, even though I had gotten almost 200 meq of potassium before I went home. I had the same doctor I had last time I was there. Is that luck or what. She told me I was "very lucky" some people with periodic paralysis actually have heart problems. UH DUH......I felt really really lucky right about then.

Today the cardiologist told me that my pacer would pick up anything "significant" ie...vtach and then we could worry about it. I told him if I went into vtach at 180 or greater, he would be checking it out at my autopsy. He laughed at me. No holter, no event monitor, nothing. I asked him if he understood that I was sick? he said, see you in 6 months, have a nice holiday and walked out.

I feel so lucky......morgan

[Mrs. Burschman]

I'm sorry, Morgan. Uh, if you have a pacemaker, doesn't that usually mean you have heart problems?

I understand the being saddled with psych diagnoses problem. It makes you feel crazy even if you aren't.

Sending you a hug!

Amy

[Becca_7706]

I'm sorry Morgan. Drs can be stupid sometimes. I too can understand being saddled with psych diagnosis.

Have a huge *hug* and take care!

Becca

[deucykub]

Oh, no... how frustrating.

I'm so sorry, Morgan. For all their education, there are some simple things some doctors just never learned. Thirty more seconds of his time might have helped put you at ease that he was at least taking you seriously (if he was, that is).

Everything the medical profession doesn't understand is lumped into the "all in the patient's head" diagnosis, and that in itself is sickening.

I hope that you soon find a compassionate, listening doctor to help you either manage or at least understand what is happening in your body. That one person can make all the difference in the world.

Here comes another hug headed your way across the miles! Did you get it?

[pastordari]

OMG!

What a disappointing encounter.

How could a cardio doc say that when you are lying there with a pacemaker?

How odd?!

The wonders of modern medicine and its inability to take patients seriously when we dont' fit a cookie-cutter diagnosis is outrageous!

I'm sorry (((MORGAN)))

[Ernie]

Hi Morgan,

I guess these docs got their med degrees in a cracker jack box!

[pat57]

Hi Morgan,

I guess these docs got their med degrees in a cracker jack box!

Hi Morgan,

my usual response is that we have to get past the diagnostic errors to get to the correct diagnosis.

That the body is so very complicated things like this are part of the process. "Someone" should do a poll and see if anyone got a correct diagnosis

as the first diagnosis- and how long did that take to get. Don't lose heart. Press on- yada, yada.

But today I rather prefer what Ernie said.

[Maxine]

I talked with a friend of the family who is also a psychologist who has some knowledge of dysautonomia, and other chronic conditions, and they said we often know more about ANS disorders then some of the MDs out there. When a select few become dumbfounded, and don't know what's wrong, they always have the old "conversion disorder" to rely on to save face.

Medical professionals are people who make mistakes like anyone else. The only difference is that some go into medicine for the wrong reason---------(prestige & money, or both), and can't admit they might be wrong, so they slap a mental diagnosis on you. IF they have true passion to help patients, then it's not likely you'll run across problems like this.

Just weed out the bad docs. It's hard, takes a lot of patience, and sometimes strategy---- .

Maxine :0)

[morgan617]

Thanks guys...I appreciate the responses. I'm about at the end of doctors, I swear. My pcp had me get labs drawn a week ago to make sure the potassium wasn't going too high. I called and asked them to fax it to me today and he hasn't even looked at it yet. He had it last Monday afternoon. They sent the labs from my ER visit, which were almost all abnormal and I was told they were fine.

I can not get into any other doctors without a referral from him, he tells me he has talked to other doctors and they say they don't want to see me, so no reason to refer and he really cares.....then doesn't.

I am tired of being lied to and not taken care of. That cardio spent less than 3 minutes (we timed it) with me, and he will bill my insurance well over 200 dollars. I think that visit was worth about 200 cents. Pushing it. And there is documented vtach on my pacer! But it's benign, because I didn't have to be shocked out of it.

And people wonder why I am so tired of pursuing anything any more....morgan

[Rachel]

Oh how frustrating. Doesn't it just make you want to yell, "Aaaarrruuuuggghhhhh!!!!" I'm sorry you have to go through this.

Rachel

[ajw4790]

That is crazy that they acted like that! For one pacemaker= heart problem. Then, to laugh at you, that is not good bedside manner!

For the pacemaker supposed to catch anything above 180, what does that mean it records it, or that it won't allow your heart past that? What info are they waiting to get from the pacemaker? I wonder why they are relying on the pacemaker? And he won't see you for another 6 months? That is crazy! It seems as though your cardio. system is having some issues that need to be addressed... ideally by a cardiologist. I wonder why they are so uncaring about it? Does your pacemaker shock you back if you go into vtach for a while at a high enough rate? So, then they think they don't have to wory about it?

It really just seems they could help you some more! Can you try another cardiologist? Maybe even a different PCP? It just doesn't seem like they are working to help you! And it sounds like you have visible and justifiable diagnoses from tests etc. So, there shouldn't be that question...

Are you on beta blockers?

Good luck! I hope it gets better!

[ajw4790]

I forgot... Where do you live? Maybe it is just to a point where you have to start seeing a different group of drs. I ran into that. I had to get away from a certain health system. It just wasn't working for me! Just thought I would check!

[morgan617]

ajw,

The pacer is just that. I had tachycardia all the time, then suddenly dropped from 130 to 30 in 1-2 beats. I was hitting the floor. I had terrible hypertension, but when they put me on the beta blockers to slow down my heart rate and lower my BP, it really exacerbated the tachy-brady problem. (They feel this is caused by scar tissue from an ablation they talked me into in 2003, but that's another story, that EPS discharged me almost immediately after the ablation, because I got so much worse)

So they put in a dual chamber demand pacer, which means it only fires if my rate goes below 60 (97% of the time), and then put me back on the atenolol. It will not shock me for vtach. It monitors my heart and will record any ventricular rate at 180 or above. But that's it. It even shows I've had runs of vtach. I don't even tolerate atrial arrythmias anymore. When the ventricular lead fires occasionally, it really bothers me. He is an electrophysiologist. I was discharged from the only other group with an EPS doctor. I got a letter from him in the mail stating he felt it would be better if I found another doctor. The consensus was guilt, because he knew better. From a nurse friend that worked there. So, I ended up with this one. There is another one in this practice but they do not allow you to "doctor hop" within the practice.

Even with a pacer, an MDA doctor who has given me an unequivical diagnosis of PP, I still got the conversion diagnosis 2 weeks ago. She refused to call either my primary, my cardio, or my MDA doctor, stating I just needed to get over my anxiety. She asked me what I was so afraid of, and I felt like saying only doctors like you.

The closest University or city is 300 miles away and they have refused to see me without referrals. No pcp will see me here without my records, and with 1000 psych diagnosis', no one will see me. My insurance will not cover me anywhere else if we have doctors here that are what I would be going for. I just needed to vent. I will sleep tonight and hopefully be over this tomorrow...I don't have the energy for this.

But thanks everyone for letting me vent. I'm done. I am sending all these guys How Doctors Think, by Jerome Groopman, so they can see what jerks they are. It doesn't even take them 11-18 seconds to decide about me...they've done it before I roll in the office.....

[Guest tearose]

Oh morgan, my heart aches for you. I get so upset when doctors label and dismiss people.

I am so sorry that you were treated so poorly.

I too am sending you hugs and I hope you were able to settle into a good night's sleep.

With that fancy shmancy pacer you have, you think you could tweak it somehow and avoid any of this rhythm issue. Did it come with a user's manual?

I hope you can avoid the ER for a loooong time. Can you imagine the care you will get with people off for the holiday?

I know you have a great attitude and in general get past these types of insults...but it just should not happen!

I think we can start to get conditioned to be treated poorly by unknowing doctors and this is not good.

I wish I could move you to another city!

I hope you get over this trouble and find that a new and wonderful doctor moves into your town and will help you live a better quality life!

take care morgan,

hugs,

tearose

[MomtoGiuliana]

I'm so sorry you continue to get such shoddy treatment. Even if you DID have conversion disorder you should be treated with respect and given time for a thorough evaluation. I am so frustrated for you.

[ajw4790]

Morgan,

I hope I didn't offend you or ask to many questions. I didn't mean to. I continue to be amazed at how awful these drs. can treat people.

I wonder if it is kinda like what has been discussed on the board before, and that they don't know what to do, so they get this attitude?

Maybe tell them that if they can not help you further if they can refer you to someone who can? Or see if they can consult with other drs?

Do you have any drs that understand at all where you are coming from? that could help you?

Also, I wonder if anything like a medical case manager could help you out at all to find resources that may help you?

I don't know, I was just trying to brainstorm ideas. I am sure you have probably asked every question in the book a million times!!!

What is an MDA dr. and PP?

I wish you better luck in the future!

[Sophia3]

Morgan

I just wanted to say I am sorry you are still putting up with such UNETHICAL behavior.

And that the MDA doc won't aid you at all.

[morgan617]

Thanks sophia, the MDA doctor actually told me to have the ER or any doctors that have a problem with my diagnosis to call her and she would verify and defend me. Also offer treatment plans. They just flat out refused to do it. So, I finally get one that defends me and the idiots refuse to contact her. Man.

ajw, never worry about questions, I'm an open book, I never mind telling people anything they want to know about me, I don't have anything to hide. This is really the only place I feel I can open up sometimes. And I know you only ask and recommend out of concern.

I actually did have a case manager at one time, but they are only allowed to follow you for 3 months. Trust me, when I tell you I have tried just about everything there is.

PP is Periodic Paralysis, it's under the umbrella of the Muscular Dystrophy family. It's a genetic disorder. It has over 30 genetic mutations, although here in the states they only look for the 3 most common. It causes you to have severe problems with any "shift" in your potassium levels. The channels that let potassium and salt flow in and out of your muscles to help them contract and relax are defective. The result is you become stiff as a board or flaccid as a quadraplegic or a bit of both. Your potassium level may never leave the "normal" range, but it shifts and it's the shift that causes the problems. The channels won't let the potassium/ salt out or let it out too soon. I become completely flaccid, unable to move, talk, or swallow. I can't get my eyes to shut, and lately it is affecting my breathing. I also probably have the type that causes a lot of arrythmias. Mix that with POTS and you have a train wreck. My blood is in Germany right now being tested for the specific mutations. MDA is my muscular dystrophy doctor.

The weird thing is, so many of us on this board suffer with borderline or low potassiums. Only one type of PP messes with the heart rythym. That's the kind they think I have and it makes us very high risk for sudden cardiac death. (my mom died of sudden cardiac death) PP is very rare. But what I was going to say is, so many of the symptoms overlap with POTS, they can't really be distinguished sometimes. Many people here suffer with weakness and fatigue, dizziness, etc and have the borderline or low potassium levels. these are ignored by the doctors as part of pots, and that's what happened to me for several years until I had my first "paralysis" in 2005. The only reason they didn't diagnose me with conversion then was my potassium was 2.6, which is a pretty critical value. But after the first one, it was psych all the way. I enjoyed that concussion and other wonderful injuries , because people were "paying attention to me." From then on, it was conversion, regardless of the fact that the very definition of conversion disorder is that there are NO physical findings that correlate with it. Go figure. Even my therapist has asked doctors to stay out of her field and she will stay out of theirs, to no avail.

I am on a forum for PP, and virtually everyone has autonomic issues of one sort or another. I think I was born into a really bad gene pool and got saddled with a few things, which muddies the waters even more, and makes it even harder for me to get any decent help, because my symptoms fit into one until I have one that doesn't and then they stop listening, because then I'm just crazy. If it's not cookie cutter perfect, it's psych.

This is why I just need to vent once in awhile and then I need to let it go. I have a jumble of things (like people here with EDS and OI, it muddies the waters) and no one has the patience or is willing to even attempt to do some untangling of symptoms, to help even a little. So, I fall through the cracks and will die as that crazy attention seeking person. My hope is, I will have the genetic verification by then and they will feel REALLY badly about how they have treated me (no heaven for me, I fear ) Anyway, thanks again everyone for your support! I am actually already much better emotionally. One thing about really chronic terrible illnesses is, you just lose the incentive to hang to anger, it's too energy consuming....gratefulformyfriendsmorgan

[corina]

morgan,

what can i say? jsut that i am glad that you are feeling better emotionally and that i very much admire your strength. you have been treated very poorly for years and years with now and then a doctor willing to spend some time on you. but as you don't fit any of their profiles they take the easy way, where they should admit you have serious things going on but they don't have the knowledge (yet) to help you.

i don't have to send you wisdom, as you are a very wise person and very strong (after everything that you have been up to in all those years), i wanted you to know that i think of you and feel very very sad for you.

love,

corina

[Eli6596]

I have an idea. If you have not already tried it, how about asking a favor of the doctor who is willing to defend you. The MDA doctor could write you a brief note listing your diagnoses at least. At the end of the note, she or he could write that she is willing to be contacted for questions if they arise. You could use the note in case of ER visits.

Karyn

[morgan617]

Corina, thank you, you are ever the sweet girl..

Karyn, she did tell me to have them contact her, but maybe a note in hand would be better. She is the head of the MDA here and should be taken seriously. Just telling them to contact her certainly didn't help, but maybe if I did have it in writing, it would help. I hate to bother them, she is incredibly busy. But I am betting she would do it for me. Thanks for the advice.

Hope all are having a wonderful day! morgan

[cardiactec]

hey morgan,

i'm so sorry you're dealing with this...................I can relate, as you know, because I've been having v-tach episodes as well...........thankfully an EP doc was standing right over my shoulder while i was attached to a monitor and he saw it with his own two eyes. fortunately for me i have the luxury of working in the field of cardiology and have EP's to my left and right and monitors to grab onto to try and PROVE IT that it's happening. ....it is so sad to begin with though that we should feel the need to have to PROVE ANYTHING - we should simply be taken seriously, and BE BELIEVED. So sorry you're being treated so poorly.

I can never understand, as you mentioned, why nonsustained VT is passed off as simply being "benign". I was told the same thing, because the VT broke on it's own and was under 30 seconds in duration. I cant remember who on this site said several months ago how ridiculous it sounds to think that if you enter a cardiac unit and see a patient in VT on a monitor, that you'd catch a doctor or nurse pulling out a stop watch clocking the VT and if the VT was less than 30 seconds, that they'd simply turn around and walk away as if it never happened. Personally, I believe whether or not your a post cardiac surgery patient, a CHF patient, post MI patient, OR JUST A YOUNG PERSON WITH ''A STRUCTURALLY NORMAL HEART'', that ALL CASES OF VT whether sustained or not should be taken seriously...............................because who is to say that the next time the "nonsustained case" doesnt turn sustained???? I can guarantee you there is no doctor that would want to guarantee you, with their license on the line, that a nonsustained VT wont ever turn sustained.................... I had to laugh when you mentioned the "funeral" part of your post.......lol, my cardio kept saying about the VT "well you have a structurally normal heart so we're not as concerned"..............lol, I said to him, so if for some reason the nonsustained VT turns sustained and I die, are you going to say at my funeral "well, she had a structurally normal heart" .......................I'm sure that would go over REAL well.

as for the pysch diagnoses, I can relate. especially to docs that just walk into the picture and dont have a clue about your med history or anything................I had that experience a couple weeks ago in ICU with a cardiologist who walked into my room and the first words out of his mouth were "you know, you look awfully thin, do you know eating disorders can cause rhythm disturbances? " I was NOT impressed. I told him that he should try living with HR's every day in the 200 range and see how well HE can keep the calories in and the weight on! that ended the anorexia nervosa theory of his pretty quick! LOL!

Hang in there girl. I know exactly how you feel. Dont let these doctor's get you down.

-cardiactec.

[morgan617]

Yea, we had that discussion, I don't ever remember waiting for anyone to have 30 seconds of vtach to go check on them when I was a cardiac nurse, and I never once heard of any one calling vtach benign, until I had it. It's beyond me anymore.

[BEE]

what a load of C*** sorry to hear about this Morgan...hmmm that is just lovely.