A Thank You To Doctorguest

[goldicedance]

First, I hope Michele doesn't delete this topic. However, if you are reading it, that's a good sign.

Anyway, I want to give a round of applause and a big thank you to doctorguest for entering the very productive and derisive dialog many of us were having with regard to the use of SSRIs.

Not wanting to bring up the particulars of that dialogue, I only want to say thank you to our mysterious doctorguest for sharing his knowledge from the medical point of view.

I also appreciate the fact that at least one in the medical community who treats POTS takes the time to read our concerns, our hopes, our fears,and our struggles about dealing with Dysautonomia on a daily basis. I am sure this doctor is quite fatigued from his/her own workday. For that reason, I am grateful that he/she takes the time to read on POTSPLACE and has gotten the "courage" and found the time to provide his/her insights.

So, thank you to doctorguest. And, if our leaders on POTSPLACE got doctorguest to make this "guest" appearance, then a thank you to you too.

Lois

[Michelle Sawicki]

Lois, I think it is very kind of you to thank Doctorguest for participating on our forum. As Nina said before, doctorguest truly cares about people with dysautonomia and has freely taken time out from a busy work schedule to share views and opinions here with all of us. We are truly blessed to have this doctor care so much for us.

Michelle

[Maxine]

Any physician who is willing to take time out of their busy schedule to post on any forum is very special in my book.

There are so many who are so dismissive to POTS, EDS, and even chiari related conditions---------one reason being they don't understand it.

I went to a surgeon who performed my brother's surgery---she did a bowel resect to remove cancer in his lower colon/rectal area. When she came to talk with our family, she was so kind, and answered many questions no matter how long it took.

When my PCP told me it was necessary to have a colonoscopy because I have a sibling with colon cancer I knew this is who I wanted to handle my colonoscopy. She did my brothers and my fathers colonoscopy. Now that I know my mother's brother has colon cancer, and my mother recently passed away from terminal cancer--(we have no idea where her cancer started considering it was everywhere)----I know the colonoscopy has to be done.

When I had my first appointment with this doctor, she was so open to going into this web site, and any other sites to learn as much as she could about POTS because I told her how concerned I was about sedation with my POTS and other conditions. This has helped me to muster the courage to get this colonoscopy done (God knows I have put it off long enough). It was scheduled the week my mother passed away, and now has to be rescheduled.

Over the years I have had so much ridicule from many different physicians on all of my conditions----to the point of being told I have manifested all of this in my mind. When this happens I feel so betrayed, so if a physician takes his/her valuable time to come on to a forum to help others it gives me a glimmer of hope in this long weary road we travel.

Doctorquest-----thank you-----------

Maxine :0)

[flop]

I would like to add my thanks to doctorguest too. There are many of us on here with different health experiences and varying levels of knowledge about dysautonomia and other medical conditions but to have the addition of a specialist to our forum is a gift to all of us. I am sure that we will all learn from doctorguest's contributions to discussions and hopefully doctorguest will gain a unique insight into living with POTS.

Flop

[Poohbear]

I also wanted to say THANK YOU Doctorguest. Not only for sharing your knowledge and thoughts on the board with us but for the many ways I'm sure in which you help people with ANS issues!!

[MomtoGiuliana]

It is wonderful to have this resource for DINET and I appreciate any time this doctor can provide to us!

Katherine

[doctorguest]

Thank you all for your kind words. Schedule permitting, I will try to be helpful to all of you by participating here when I can. As a standard disclaimer, my statements/opinions/advice should never be used as a substitute for a visit and a discussion with your treating physician, who knows you and your case.

[Ernie]

Hi,

I want to thank Doctorguest for helping us and trying to understand our disorder. We understand that you have limited time and we are not having an official appointment and we appreciate your generositity.

[BuddyLeesWife]

Love the name Doctorquest - Johnny Quest was my favorite cartoon ( at least I am assuming you took the name from the cartoon).

Thanks for making time for us.

[corina]

i would like to say hi to you doctorquest! and thank you so much for taking the time to help us and listen to us eventhough we are not even YOUR patients. i think it is very important for us to have a doctor around who is interested as there are so many times when doctors tell us that it is all in our mind, or doctors who want to help but simply don't have the knowledge.

so, welcome to our forum and thank you so much for spending your time with us!!!

corina

[PattiL]

Doctorguest,

I too would like to thank you for taking time from your schedule and caring enough to help everyone here. After most of what everyone has gone through with some of the medical profession, it's so nice to know that there are still some extremely caring doctors out there.

Thanks again so much.

Patti

[Jersey Girl]

Thank you--thank you--thankyou, Doctorguest, for your interest. Martha

[morgan617]

I saw you pop up here and thought, this is the greatest thing since....anything that's the greatest thing to anyone. Thanks so much for taking the time out of your busy schedule. Having been a nurse for 29 or 30 years, I know this is a sacrifice for you! Thanks again! morgan

[yogini]

Is it doctorguest or doctorquest? Anyway, welcome! This place is a lifeline for many of us. Thank you for taking the time to provide your insight and medical perspective on the forum. Also, thanks for the other help you've given to Dinet. Like most, I'd never even heard of POTS before getting sick. The medical information here has been invaluable and helped in my improvement.

-Rita

[doctorguest]

Hi everyone,

I feel humbled by your appreciation, and I think that I don't really deserve all of the accolades... I see that most of you have had a hard time finding the right doctors who either have the knowledge of autonomic disorders or the willingness to learn how to diagnose and manage these. I am not surprised that most people here have been misdiagnosed with anxiety disorders at some point since many physicians have no knowledge about POTS and other autonomic dysfunctions, some physicians who do know about POTS mistakenly think that it is always associated with anxiety, and yet others feel that if signs/symptoms and diagnostic tests don't fit into a nice category of well-known and widely-used diagnoses that it must be rooted in psychological causes.

If you happen to encounter a doctor who does not want to listen to your complaints and concerns, does not know about POTS AND is not willing to learn new information, then my suggestion is to not waste your time, energy and money and find a better doctor. All of you seem very knowledgeable about your condition and motivated to get help, qualities that should be very valuable to your doctors because it helps them help you.

Doctorguest

[cardiactec]

i think it's doctorGuest.

thanks doctorguest. you are much appreciated here on the forum.

[MightyMouse]

You've stated something I've said here so many times: if a doctor isn't willing to learn and/or takes the "blame the patient" path, it's time to move on and find a different doctor. The pitfall can be, though, that then one gets accused of shopping for a diagnosis/doctor hopping. I'm outspoken at this juncture in my life, so I will state that I'm not willing to accept a doctor who thinks they know it all, and/or aren't willing to learn something that challenges them or their assumptions.

One of my favorite docs is my EP (not an ANS specialist, but a really great man who likes to learn!). Last year I went for my annual check in appointment, and he had a new resident with him. We were going over my history, and he asked me how low my bp could get before I actually passed out. I told him what he already knew (this question was for the benefit of the student), that I could be at 30/-- and still be upright and talking, although shaking and shocky. He turned to the new resident and asked if he thought that was possible for someone to have a bp that low and still be standing up, and talking. The resident got a squinty face, like he didn't think it was possible, and was shaking his head no. My EP corrected him told him that for people like me, it's not just possible but it happens all the time. He then went into a bit of a discussion that explained it (sorry guys, I can't recreate that explanation to save my life!! It was very techno-medically-jargon.).

Anyway, doctorguest, I appreciate that you have joined our forum as an active participant not just a lurker. We are a chatty bunch, with a wide variety of viewpoints and backgrounds. Glad you're here.

Nina

[Patricia]

As someone who has been severely afflicted for 20 years (undiagnosed for nine), and still continues to face disparaging comments from doctors uneducated in dysautonomia, I wish to extend my profound gratitiude for your offering legitimacy to some of our unanswered questions.

Thank you Doctorguest for what time you are able to contribute. THANK YOU!!

Patricia

[morgan617]

I live in an area where virtually no one understands ans problems, nor really wants to learn.

I have received every possible psych diagnoses you can, except schizo, bi polar, or borderline. I have had tox screens without being told and been on videos and sound in a hospital so invasive, they even got to see me go to the bathroom. I have run into a few, "I don't knows" and a whole lot of "psychogenic babble."

But I have been so blessed to have a PCP for 23 years, that is not only the premier doctor in the Pacific Northwest, he's also willing to admit when he is stumped. He's an intensivist and internist.

He has a separate 5-6 inch chart, just filled with info I have taken to him. He reads everything I bring him, is open to any test I ask for and actually just leaves my chart (which is about 10 inches ) on his desk, to pull out 2-3 times a week and review, just in case he has "missed something" He has sent me to many specialists, who send me straight back to him. And he always has taken me back. he lets me titrate my drugs, knowing I know what works best for me, as long as I keep him updated. I have a gastro I've had for 20 years, and I am the topic of all their conversations when they see each other in the hallways of the hospital.

Recently he was hired by the hospital, it is not working out like they told him it would, but he is one of those rare birds that really is in this to help people. 95% of his patients are medicare or medicaid. I am one of the very few with actual insurance. He could not pay his overhead and therefore had no choice. How ever, he told me point blank, no one else in this town would take me on. He's right of course. He has referred most of his patients to other doctors, but said he could never do that to me, I would not get the help I really need. Even now he says i don't get what I need from him.

I don't see this as a stigma on myself. I see myself as a very complex patient. Health care itself has changed so much since I became a nurse a million years ago. I don't think all doctors are bad. I think doctors that become psychiatrists when they don't know what's wrong, as insecure (and bad). I do not see that as an excuse, however. I just let them know not to let the door hit them in the backside as they exit the exam room. I have so much more respect for a doctor that shrugs his shoulders and says, I have no idea what's wrong with you, than I do for the instant psych doc.

As a nurse, I did see the frustration of doctors that really wanted to help people and were just at a total loss and completely stumped. I've seen doctors make awful mistakes. (I lost my mom to one) I've seen arrogant, but brilliant docs and really bottom of the barrel stuff. And I've seen doctors who look patients in the eye, sit on the edge of the bed, cry, and throw things.

I guess what I'm trying to say is, I've seen the great, good and bad and everyone of them is just a human like everyone else. Sometimes they just really don't care, but sometimes we also ask for too much. The greatest thing we can do for ourselves is be our own advocates. If a doctor is completely turned off at the idea that you want to be proactive in your care, and upset that you may know more than them about this (and why wouldn't we, in most cases?) then it is time to look for someone else. Sometimes a doctor and patient just don't click, just like we don't click with every single person we meet. But even in an area where I am very stuck with very few choices, I have found 2 doctors who stick by me.

There is always going to be that bit of a "doctor hopping" thing if you have to change much, but it's just one of those things you have to deal with, much like you have to deal with syncope. There is a fine line. If your expectations are realistic, chances are, you will find a decent doc. But take into consideration, even the specialists have some differing opinions, so if you are going to someone willing to learn, then teach. If you expect all the answers, you will be sadly disappointed, no matter who you see. We ALL started out knowing nothing about this illness and it has taken me a long time to learn what I do know and I've just scratched the surface.

Doctors have been placed on pedestals, by patients, over a very long time. That puts a great deal of pressure on the really good ones. You can't say a human is a God, then be disappointed when he/she lets you down. because, in the end, they are just like you and me. Flesh and blood and flawed.

Don't think for a moment I haven't been burned, because believe me, I have! A Lot. But unless a doctor is completely closed off to me, I don't take their insecurities personally. It is their problem, not mine. I have said I would like just one validation from a doctor that doesn't contain the word psych in it, before I die, but that may not happen. In the end, it won't matter. The people that do matter, including myself, KNOW I am sick.

My pcp still doesn't get how I can faint when my BP is 210/120, but he believes it's real. That's what matters to me. And that's what he teaches his Residents.

So, doctorguest, I see you as I see my pcp, don't know everything, willing and wanting to learn, open, very smart, imperfect, but willing to be that to give good care. I will never make it back East or to the Midwest to see a "REAL" ans specialist, so it will be good to have input here and there from one to give to my doctor, who will, Thank the Lord, read it! (He says it's his dream that he could actually get me into someone that knows what they are looking for, LOL)

Sorry about the novella.....too verbose tonight...and as per usual, wandering all over trying to make some point I lost along the way......WE deserve good care, and a doctor deserves respect until he/she has proven they are not open to anything new or difficult...I find I tend to be defensive walking in, that's my bad, but if I tell a doctor that, and he/she is still doing their bad, then it's bye bye. otherwise, I will do whatever I can to work with them....sorryitssolongmorgan

[Lukkychrm42]

Hi there,

I seem to have been asleep for the previous discussion , but I just want to say thanks for being here at all! I won't gush with overwhelming praise, because I don't want to embarrass you, but it means a lot to us.

I have had my share of know-it-all doctors and various opinions of "fainting is absolutely normal" and "you're making a big deal out of nothing," but these people get kicked to the curb pretty quickly! And then there are the gems... who go beyond the call of 9-5 and really want to know how you're doing... and are truly ecstatic over improvement, not to mention the research, collaboration with other doctors, etc. (I'm including my physical therapist in this gem category!!!!!)

When in an ER setting, I just to my best to educate the staff under difficult circumstances, but thankfully these are few and far between. Other than that, rather than assuming every new doctor's appointment will lead to a miracle solution, I treat each visit (more for new doctors) as an interview- is he/she willing to work WITH me, is he/she compassionate or narcissistic, will he/she try to figure out what's going on or just whip out a prescription pad, and am I comfortable here? If the answer is no, then the doctor gets a swift "You're fired," in the words of my friend Ali.

(This is kinda random, but I have to say, I'm fairly impatient in a lot of ways, but my doctors work with non-dysaut related life-threatening cases, too, and I feel very humbled when I'm in the room waiting and the nurse informs me that the doctor is with a patient in the hospital or in emergency surgery, or even when they take phone calls from other doctors. Not to say that POTS doesn't seriously impact my life, but it really makes me feel small, especially knowing so many who are dangerously ill and having just gone through some pretty scary stuff myself over the past 2 months.)

[dawn]

Doctorquest,

Thank you for joining the forum.

It is so kind of you to take an interest in us-this condition is so frustrating.

It is very hard to find a physician who takes us seriously. Mayo Clinic is good

at giving a diagnosis, but then they do not follow up with us.

I am fortunate to have an internist who has followed me since I became ill

13 years ago.

Once again, thank you for your interest and time.

Dawn

[LindaJoy]

Doctorguest, I would like to chime in to thank you, as well, for taking the time to interact with us here about our condition and your knowledge of it. Your support means a lot to us, as you can probably imagine. I, too, have been around the bend a time or two with all of the psych diagnosis, from anxiety to actual somatization disorder (that one always gets me, especially when you see my chart and all of the abnormal lab results I have--I also have eosinophilic gastroenteritis, as do my two children, with severe atopy. My IgE level is enough to make even the strongest person take off, screaming into the night!)

After two years with a POTS diagnosis and no treatment (I was diagnosed by someone who does excellent testing but no follow-up care), I've finally found two doctors who are familiar with the syndrome (mine is neuropathic, autonomic and small fiber, lucky me) and are seeming to show signs of being very, very supportive and helpful in the long run. I'm finally feeling a little hopeful.

Again, thank you, Doctorguest. I know we'll not only benefit from your support and knowledge here, but that we'll be able to help you, as well.

LindaJoy

[doctorguest]

Hi everyone,

Like Lukkychrm said, I am officially "embarrassed" by your gratitude . I feel for all of you who have been misdiagnosed or not taken seriously by your doctors. Morgan, you are exactly right in what you wrote. It is not a secret that where you live is a huge factor in the type of medical care you receive. I hope that when you feel stronger, you're able to travel to one of the well-known institutions that are capable of providing diagnosis and treatment, in addition to the validation that you're looking for. As you know, being a nurse or another health care professional can be a "negative" when it comes to getting medical help. It's unfortunate, but sometimes nurses and physicians who are sick and are seeking help from their colleagues are treated with more scrutiny than the general population.

Lukkychrm, yes, everything is relative in life - there are many disorders that are worse than POTS, but everyone deserves good care when they're ill, especially when it affects their functionality. What type of diseases get more publicity and funding for research is unfortunately a very political and financial issue. There are less disabling conditions in medicine that get much more attention in education and research, partly because the pharmaceutical companies see an opportunity to cash in on these. I won't go into more details than that...

Dawn and LindaJoy, I am glad you found good physicians to work with. Mayo Clinic has only 3 locations around the country, so routine follow-ups on every patient would be difficult, if not impossible, for geographical reasons.

[Jacquie802]

Hi,

I too would like to thank DoctorGuest....After reading alot of the posts I never realized how lucky I am to be living in Boston where there are some of the best hospitals. I hope everyone finds a doctor who helps them....

Jacquie

[mattsmum]

Just another thankyou too Doctorguest.

If you are studying Dysautonomia or know of someone/a group of people to study it, this forum is your oyster. There is no better experience than to read people who 'walk the talk'. Real experiences of how people cope with this every day defeat any text book. Heck there's even some brilliant people formulating a video which is so exciting to watch develop. Enjoy your stay with us.

Sidenote: Nina I was grinning to myself reading your story a few posts up how your dr was explaining how you could still stand up at such low pressure. Reminded me of when I begged my psychologist to take my bp to prove I wasn't making things up and the astounded look on his face when it was so low the bp monitor gave an ERROR sign. He was like well you should be dead lol.

Julia