Why Go To A Dr That Doesn't Understand Dyt Or Pots

[gertie]

I've been asking myself that question. I also read post of others that keep going to a dr that doesn't know how to help them. I went to a neuro for awhile that didn't understand dyst. Everything I ask her she just says, don't worry about it. I quit going. If you do, why do you continue going to a dr that isn't helping? No disrespect intended, just curious. I think I kept going simply because I know I need medical attention & think they would eventually be able to help me. Thanks.

[Mary P]

I have no choice because where I live I can't change doctors. The first N I saw diagnosed PAF but said I shouldn't return to him because my GP had to take over and get me the care I would need. However, my GP admits that she knows nothing, yet neither has she ever tried to learn anything. I have to keep feeding her info with the hopes that eventually something will help her to know what I'm going through....enough to make her care.

For example, I made her very aware of my all-over muscle weakness and ache. Still, she prescribed a sleep aid that caused a terrible reaction..additional muscle weakness and pain, anxiety and a sort of restlessness which I've never experienced throughout my entire life.

On checking for side effects the next day I read where anyone with muscle weakness should avoid the med she prescribed. I'll have to write about this for my next visit and keep a copy for myself. Hopefully she will learn what not to prescribe any more.

I see an ANS doctor next week and will ask him to write a detailed report for my GP. I'm scared to death that she'll have no idea what to do should I need a change in the med(s) prescribed, etc, etc. I had to make the appt with the ANS doctor myself because my GP had absolutely no idea who to seek out. etc.

Through the Meet Others Program I've been in touch with a woman who has learned a great deal over the years. She put me in touch with the ANS doctor and his lab in Montreal. She has been a godsend for me and has provided me with the help that my GP can't provide.

Mary P

[cardiactec]

thankfully my cardiologist pretty much has become my primary caregiver -- mostly for POTS, but i also discuss other things with him that probably would be more appropriate in discussing with a GP/PCP. sad truth that most GP's dont have a clue about autonomic dysfunction/POTS - I know mine does not. it is even worse when GP's dont want to learn more about it and/or do not have the time to learn more.

i think most people probably keep going to docs that dont know anything about autonomic dysfunction for the very reason you said -- because you know you need medical care.... also, most docs who are neurologists caring for auto dys patients are in their own subspecialty of neurology...... no plain jane neurologist (at least from my experience) works with patients who have autonomic disorders such as pots -- so you end up having to venture off to other facilities that, for the majority of us are off in some far away distant land from wherever it is that we live. this is a strain for a lot of people to look into for appropriate care -- physically and financially so i'm sure many people just have to resort to their hometown docs.

there is not a lot of understanding, answers, or treatments for auto dys, that most plain jane docs dont even want to spend their time tapping into resources to try and help their patients - mainly because they dont want to fail their patients. understandable but sad. ...........i had a cardiologist i worked with several months ago enter a discussion with me about pots. he said he used to do a lot of research and used to be quite interested in pots, but when he spent countless hours trying to "find the answers" and trying to find therapuetic meds for his patients which failed, he said it was no longer worth his time because it left him feeling like a failure and left his patients no better off. sad. I just saw my autonomic dys neuro down in boston and kind of reminded me of the discussion several months ago i had with the cardiologist. the neuro in boston told me that he has weekly phone conferences with the big groups (mayo, vanderbilt, etc) and that nobody can ever agree on anything regarding pots -- not on meds/treatment options, not on etiology). tough i'm sure.

I am grateful to have a cardiologist who is in it for the long haul with me in regard to pots, who is willing to learn all he can about pots, and who has not given up. I can only hope and pray for the same type of care for all of you - you all deserve it very much.

-cardiactec.

[Ernie]

Hi,

I don't go to a doctor that doesn't know or is not willing to learn about my disorder.

[jbrian00]

The closest ANS center is at the University of Iowa, which is like an hour away, but they will not see a patient without first having a consultation with their PCP to see if they could be of help. I'm relatively new to my area and have not seen a PCP here yet (although I have an appt on Monday).

If he's like most GPs though, he probably has not heard about POTS. But, everyone needs a PCP, so unless your lucky enough to have one that has heard of POTS or willing to research about it, you are pretty much stuck.

My question is...what is the best way to introduce the fact that you think you may have POTS/dysautonomia to your PCP, who has no knowledge of it? I'm thinking of bringing in a POTS information brochure, but I don't want to overwhelm my doc on my first visit or scare him off from treating me. But how would he be able to treat me if he doesn't know what he's treating, or to find out what exactly is wrong with me! Also, he may not know to prescribe tests to check for Sodium/blood volume levels that I might need, or question me if I mention the tests.

Advice needed for my first visit with my family practicianer.

Thanks

[jbrian00]

Hi,

I don't go to a doctor that doesn't know or is not willing to learn about my disorder.

You've gone through a lot of PCPs haven't you?

[Ernie]

HI,

No, I was lucky enough to have found a PCP that believed me from the beginning of my crash that I was really physically sick.

Many specialists and ER docs thought that I was making it up but he kept backing me up and referring me to other specialists until I found the real diagnosis. He signed my referral to NIH and many other big centers. Now that I have all the proofs that I am physically sick, he is so proud that have standed by me all those dark years!

[Carly87]

I am one of those people who goes to a doctor who doesn't understand...I've been through dozens of random appointments and testing, 2 PCPs, a cardiologist, not to mention all the ER doctors...Before coming to DINET, I honestly just thought this was something a doctor could not help me with.

I feel like I've almost given up on doctors. It is embarrassing to go to the doctor and try to explain the stuff that I deal with on a daily basis, just for them to recommend an SSRI because "ANXIETY/PANIC DISORDER" is written all over my files. I ask too many questions and it makes me look neurotic and highstrung, further promoting the "anxiety" thing. So many health professionals also thing I'm a hypochondriac because I complain of all these different ailments at different points in time.

I also have a problem with people taking me seriously because of how I look and doctors are no exception. It really is humiliating for me to go into the office or ER in such ill health and get snubbed because I'm young, blonde, and look fit. My cardiologist consistently tells me nothing is wrong because my echo is normal, some people just have high heart rates. My PCP did actually diagnose me with Inappropriate Sinus Tachycardia, (which he still believes is caused by anxiety), and he treats that with beta-blockers. I rarely have panic attacks, and my anxiety is at a manageable level- however my symptoms (and there are many) persist.

I guess I just put up with it because the beta-blockers do help a lot, and I feel like I know much more about my condition than a doctor around here would. I would love to see Dr. Grubb or another equally knowledgeable specialist, though it is probably impossible at this point in time. I live in Western NY and the travel and cost would be too much for a broke college student such as myself. On an ending note, I am incredibly thankful that my dysautonomia is manageable (for the most part) and that this forum has given me the knowledge to keep on movin forward!

[jbrian00]

I am one of those people who goes to a doctor who doesn't understand...I've been through dozens of random appointments and testing, 2 PCPs, a cardiologist, not to mention all the ER doctors...Before coming to DINET, I honestly just thought this was something a doctor could not help me with.

I feel like I've almost given up on doctors. It is embarrassing to go to the doctor and try to explain the stuff that I deal with on a daily basis, just for them to recommend an SSRI because "ANXIETY/PANIC DISORDER" is written all over my files. I ask too many questions and it makes me look neurotic and highstrung, further promoting the "anxiety" thing. So many health professionals also thing I'm a hypochondriac because I complain of all these different ailments at different points in time.

I also have a problem with people taking me seriously because of how I look and doctors are no exception. It really is humiliating for me to go into the office or ER in such ill health and get snubbed because I'm young, blonde, and look fit. My cardiologist consistently tells me nothing is wrong because my echo is normal, some people just have high heart rates. My PCP did actually diagnose me with Inappropriate Sinus Tachycardia, (which he still believes is caused by anxiety), and he treats that with beta-blockers. I rarely have panic attacks, and my anxiety is at a manageable level- however my symptoms (and there are many) persist.

I guess I just put up with it because the beta-blockers do help a lot, and I feel like I know much more about my condition than a doctor around here would. I would love to see Dr. Grubb or another equally knowledgeable specialist, though it is probably impossible at this point in time. I live in Western NY and the travel and cost would be too much for a broke college student such as myself. On an ending note, I am incredibly thankful that my dysautonomia is manageable (for the most part) and that this forum has given me the knowledge to keep on movin forward!

I've had the exact same experiences. It is highly frusturating. Even my parents are convinced that my problem is only anxiety/panic, because that's what all the docs have said. So I have to battle with them, as well as my docs to try and get through to them to consider the possibility of it being something else, like POTS, that is causing my symptoms and making my anxious. Granted, I have had social anxiety, but mainly I am anxious because of my health and symptoms that aren't being addressed properly.

That's why I'm seeking advice on how to tell my doc that I might have dysautonomia (POTS) without them dismissing it off as anxiety or hypochondriasis.

James

[jump]

I also have a problem with people taking me seriously because of how I look and doctors are no exception. It really is humiliating for me to go into the office or ER in such ill health and get snubbed because I'm young, blonde, and look fit. My cardiologist consistently tells me nothing is wrong because my echo is normal, some people just have high heart rates.

Carly, I can completely relate!!! Because I'm young and appear healthy my PCP dismissed my complaints as me "just being a worrier" for a very long time. My cardio also told me that because my echo was normal there is no reason to seek further treatment.

I have gone back a few times to unhelpful/unknowledgeable doctors, although at the moment I am trying to find someone more knowledgeable. For me, I kept going back to an unhelpful PCP because when she would keep telling me that it was "normal" to have the symptoms I was having, I assumed she was right. I would go home and say, "well, I guess this is just normal...." It was only when my friends and family were really concerned for me and my symptoms were affecting my daily life in very noticeable ways that it occurred to me that maybe my doc was wrong. Then I tried another doctor who knew nothing about POTS with the home that he'd be open to my educating him - which he was, but when it came to trying to find treatments/medications, he just kind of said there's nothing life-threatening going on so I should just go home and suck it up. Which I think amounts to him simply not knowing what to do to help me.

There simply don't seem to be too many doctors out there who know very much about this, and certainly when you live in a rural area like I do, your options are limited.

Like others have said, my symptoms with the medication I've been able to wrangle out of my doctors are controlled enough that I can get by in my life. And because I had POTS untreated for so long, I kind of got used to most of the symptoms anyway. I do have moments when I long for some more relief from what I deal with day-to-day, but until I find a different doctor I'm not sure I'm going to get that relief.

jump

[pat57]

Carly, look at the bottom of this page for contact info in NY.

http://www.nymc.edu/fhp/centers/syncope/index.htm

[Megan]

My current PCP is the dr I've been seeing my whole life (he delivered me). Even after years of me trying to explain to him, he still believes that my disorder is a mental thing. I've decided I'm not going to put up with that any more and I have an appointment with a new pcp set up for August, after I come home from studying abroad. I'm hoping to explain everything as well as I can and have plenty of information for her to read/study so that I can have a good working relationship with a dr. who can treat me for "normal" sickness while be knowledgeable about my pots.

Meg

[gertie]

Thanks everyone. I live in a small town & the PCP I've been going to for years has never heard of dyst. It's an hours drive just to see an Endo. The closest neuro that would know about dyst is approx 3 or 4 hour drive & if I had the energy to go I probably couldn't take anything they prescribed, unless it was bed rest. It is a helpless/hopeless situation for a lot of us.

[hollie]

I have not settled on a dr. Everyone I've seen has no clue what is going on. I found one that I LOVED, but she is has moved to another clinic far away. I'm trying another a week from now, hoping it all goes well! I will NOT settle for someone who will not take me serious and is of no help. It's taken me six months to get into this new dr. and am hoping he will help. If not, it's (un)happy hunting again for another.

Hollie