Guess it's my turn to "see a psychiatrist"

[corina]

Hi guys, I didn't want to write about this at first, because I was sooo disappointed. But maybe we all can learn another lesson (as if we need some more!!!).

When I was first seeing my new doctor I had a very good conversation with her, she listened to everything I said, my PCP wrote her a letter as well, and we agreed on doing more tests. I wanted to do that (although I doubted at first) because my neuro (who officially doagnosed me with POTS) couldn't help me anymore. When reading PPforum I read about all your tests, and I only had stress echo, TTT and some bloodwork. This new doctor told me I could use my meds (so that I wouldn't become worse) and we would see what that would bring.

Well, it brought me no where! Another doctor who came to see me for the bp test didn't know what mestinon does and after 5 minutes standing (in which I felt very bad but my bp staid high enough, and my hr didn't go up because of 200 mg bb's!) he was done with me. He told me there were some areas that are unknown by doctors but maybe I could "make some room for the psychological side"!!!!!!!!!!!!!!!!!!!! I staid calm (yes I did!) and answered him. If it were psychological (which I've thought of a 1000 times) I wouldn't have that for more than 4 years!! Life is just too beautiful, I have children, I had a real nice job, I was sporty, I LOVED LIFE!!!! He told me some more things and after about 5 minutes I thought this was enough and I said I wanted to stop the conversation, I thanked him for his (precious) time and my husband and I left (but not before my husband tried to explain him as well, allthough he was VERY angry, he staid decent and calm). I was thinking of Ernie who also had some really hard times with doctors (and most of us have!) and I thought: I won't let him destroy my life (or what's left of it) never EVER! I was very proud of myself on how I handled this as I was on my husband because he stood up for me. He (my husband) also called my PCP to let him know this has happened. And my PCP will help me further, I'm sure about that!

Lesson one: I'll never ever do tests again, when I'm on my meds (although it's tough, it causes misdiagnoses).

Lesson two: stay calm and polite but leave! At least I'm proud of myself being able to do that.

And the third lesson I forgot (of course )

I hope this helps some of you, and you know what: these kind of doctors really make us need psychological help. If it weren't too sad, I would smile about it!

Well, I guess I need some peace now!!!

Take care (and sorry for the very long post)

Corina

[Ernie]

Hi Corina,

I am sorry that you meet with such a incompetent doctor who did not realise that your results would be biased because of medications. I am really proud of you for standing up for yourself and for not letting him put you down.

I hope that you find a good specialist soon.

Ernie

[persephone]

Corina, I sympathise completely- I was told it was "psychological" for ELEVEN years- from when I was a little girl. But you KNOW you are right, and that this guy is wrong.

I was told last year that I needed to see a neuropsychiatrist who dealth with unexplained physical symptoms. The neuro I saw said "Can I film you? I want you to perform for me." I am now considering legal action.

I'm so proud of you or staying civil and calm- I always find it incredibly difficult!

You are NOT ALONE. POTS is REAL.

My headmistress from high school, who I'm still in touch wiht, is married to a former chair of the BMA (British Medical Association). He told me once that all doctors will try and blame things that THEY can't explain or don't understand on STRESS olr psychological ISSUES_ partly because it's easier, and partly because by doing that, they provoke you into anger and you fall into their neat little category of 'stressed individual' because you get so frustrated.

I share your pain. I'm here for you. don't accept it. And don't go to see this Doctor anymore!

Lots of love and hugs in support!

-P x x

[Ernie]

Hi Persephone,

That's really interesting comment about why doctors tell us it is psychological: They want to trigger our anger and justify their psych diagnosis.

It will be a good incentive for me to stay "rational".

Ernie

[persephone]

I dunno if that's how it works in the states, but every time I go into hospital here it follows the same pattern, or at least it did before I got my diagnosis.

The BMA chair told me that they give you 7 days. If after that, they can't find out why you're unwell, they WILL say it's stress.

Well, Ernie, guess what--after he told me that, the next 4 times I went to hospital I was told on the SEVENTH DAY "You work very hard at University; do you tihnk you're stressed? What about depression? Does it run in your family? The mind is a powerful organism."

And of course, I would feel myself getting riled, worked up, frustrated and upset. I would often break down in tears because I was so disappointed at this attitude being taken yet again. For another Dr breaking my trust. But by getting upset I was just offering ammunition to these bozos!

I always try SO hard to stay calm now. It doesn't always work, cos I can feel myself go tense when it happens...

Maybe I should meditate, just sit going "oooooommmmmmmmmmmmm" while these people spout garbage!

[calypso]

Corina,

I am just glad you are so smart that you know this doctor is bogus. Continue to stand up for yourself and be proud, but at the same time don't waste too much energy trying to change these doctors. They tend to think backward.

Hope you find a well-informed specialist soon.

Amy

[ariella]

Corina,

You know that you won by not feeding into his "psychological" thing, and remaining calm. Unfortunately it's scenarios like this that make many people avoid even emergency medical care. Happened to me today, was having trouble with my mouth muscles and breathing, (a little better now) but since my workup for myasthenia is not complete, I froze at the thought of going to the ER. I know, I know, irresponsible behavior on my part, but I couldn't face the possibility of meeting up with the neuro who thought I was faking my balance problems before my POTS was diagnosed.

Hoping your primary will converse productively with this new doctor.

Ariella

[Roselover]

Corina,

I too am sorry for what you faced, but so proud of how you handled it. I really hope your PC has some suggestions for you and even makes his/her own comments to this stupic Neuro. It must be hard to be a doctor and find yourself at a loss, but I am appallled at how much they valued their knowledge over compassion for their patianets. ( Not all docs, of course, but there sure are a lot out there)

Hope you can rest and recover well,

Sending a beautiful yellow and pink rose named Pure Poetry warm your heart. Here it comes... did you catch it?

~Roselover

[MightyMouse]

Corina, what an unfortunate appointment. Sorry you had to experience that... Nina

[morgan617]

Corina, am really sorry about what happened. It's great that you could remain calm, and wow, your husband standing up for you is wonderful!

I don't know if you remember my horrible er experience a month or so ago. I never heard back, so filed a formal complaint with the state. Then day before yesterday got a bill from that hospital.

I called the head of er and said I would not pay and I didn't care what they did about it. I stayed very calm also. I told her I had filed a formal complaint. She said all of the personnel involved had written statements and all agreed NOTHING had happened (yes I was making it all up) and they felt I had received superb care. okaaayyy

Lesson #3 Corina NEVER go to an ER where all personnel feel they are superb and superior. morgan

[Guest Julia59]

Corina,

I'm sorry you had to go through that. I'm glad you kept yourself calm, but at the same time didn't put up with his bullroar either. I didn't go off my meds either when I took the TTT---which is why I didn't pass out.

It's really bad when you feel so terrible physically, and then you have to deal with these types of doctors---(who could quite possibly need psychological help themselves.) They can't be wrong-----or know every answer, so to protect their fragile ego's---they feel a need to make the patient feel that they are the ones who need psychological help.

It can really whip me down at times, but I eventually pick myself up off the floor, and end up stronger for it. Now I have no fear standing up to doctors----no fear all all----in fact i'm beginning to enjoy seeing the looks on their face when I do stand up to them.

I removed a lot of my post---as it was too much about my issues, and have that same information on another one.

This post is about you, and I hope you can find someone to help you soon----

Julie :0)

[geneva]

Corina, You and your husband are to be congratulated for handling yourself so professional....something the doctor could have learned from you. Do not let this get to you. Just back to your doctor who believes in you.

Hope you had a good rest.

[Miriam Poorman-Knox]

Sadly if we don't need one before viting these specialists we do after!!!!!!!

So, So sorry. So proud also. Remember I went to mayo and they did a tilt while I was fully medicated including for that day!!!!DUH Miriam

[DancingLight]

corina,

aaaaaaaaaaaaarrrrrrrrrrrrrrrrrrggggggggggggggghhhhhhhhhhhhhhhh!!!!!

i wish i could think of an idiom....oh, i've got one...give him a knuckle sandwich!!! or a shot to the moon!!!

i am so sorry that this happened to you...i am so proud of how you and your husband stood up for yourselves.

you are so right...it is so clear that you love life and flowers and your children and learning...you have such a big spirit.

i hear you on that...i have so much passion for life...why would i want to feel this way??? i want to be out doing things and livign life, and i know that you do too...

my best friend has taught me to opt for graciousness also...it is so hard sometimes though...i want to punch them instead!

my medical records are also laced with the psych diagnosis...

i am so glad you kept your humor...loved the title of your topic!

goodnight!

emily

[DSM3KIDZ]

sorry to hear about your appointment. I think alot of times the doctors need the psychiatrist. If they could just wake up and see that no one wants to feel miserable and admit that they just don't know how to help instead of trying to make us feel worse. That's cool your husband stood up for you and the way you guys handled the situation but I'm sorry you had to go through it in the first place.

I'm still amazed that we have to teach the doctors about our condition. Their the ones that went through all the schooling. To bad we couldn't collect the pay check

Dayna

[morgan617]

The real problem is, the doctors that DON'T want to know about our condition, and then turn to defensive scared rabbits when confronted with some stupid lay person who knows more than them. When I was in nursing I wanted to soak everything up like a sponge. Where are those people now? People who want to learn and grow in their professions? Not just doctors, but nurses and all people in the health care field. It seems the majority wants to be docs in a box anymore. Treat em and street em. It is so different from when I was a young nurse and everything was cutting edge and people actually wanted to know about new things. But it has become so much politics and money. The good doctors quit and cry about malpractice, but make no effort to keep their peers in line. Imagine if the good doctors did not put up with the bad ones, how different it would be. I have done the right thing in the past and lately and all I've gotten is kicked in the behind, because it's a good old boy system and no one is willing to rock the boat. We had a doctor turn in his group for medicare fraud to the tune of several million and then high tail it to another state. He had the luxury of doing that, but at least he took care of business and didn't put up with those other idiot sticks. If only the good docs could see or would see what the bad ones are doing, and not just throw their hands up in the air, but do something about it. They are protecting the very people that are putting them out of business with malpractice suits and they continue to turn a blind eye. It is so discouraging to me as a previous health care provider to see the slippery slope we are on. When in doubt psych it out. God, how depressing.....morgan

[sally]

Although now, we as a family have wonderful docs that take of us (finally!!) and we are very fortunate indeed to have them and we let them know that often, it wasn't always the case.

We've had to change many times and go through alot of physicians who were very inconsiderate and quite rude at times and seemed uncaring or maybe they were just confused as to what was going with us, who knows....at the time we were dealing with these particular docs it was most frustrating on top of being ill and scared.

I think the most ridiculous statement I've ever heard from one physician is when I was attempting to explain the weak exhausting feeling that we are all SO familiar with and now know is a common symptom of this problem. But, at the time before diagnosis, on one visit to a doc I explained that I would frequently get so exhausted just carrying a small amount of paperwork from one area to another area (few feet away) in my arms that I would be weak and breathless and had to sit for hours or fall down and this only happened in the morning hours.

His statement to me was...."well, if I picked up my refrigerator and carried it from one point to the other I'm exhausted and weak too". I about fell over in shock!

What a nut!! I think I just sat and looked at him not knowing how to respond to that one....a lot of difference between about 3" of paperwork and refridg don't ya think? crazy!!!

I think we should start a thread on the most ridiculous statements that have been said to all of us by these type docs. I can just imagine what some would say... it would at least give us all a laugh at the stupidity of it all.

hang in there....

[corina]

Thanks you guys, for all your sweet words and telling me about your own experiences. That helps me to stand strong!!! I know (and knew before) these things happen. It was just that, since I'm already diagnosed and there was NO doubt about it (bp went low enough and hr went up from 80 to more than 180 during the TTT), I expected this doctor to HELP me. Although I can live using medication (I don't have to stay in bed all day), I want more of life (if possible). I asked the docs if I was allowed to use the meds and they said yes. And now he sent me away!!!! I still can't believe it, I trusted the guy!!!! Anyway my PCP told me that he will find out what other tests can be done (like an MRI and maybe 24-hr urine test, he would have a look right here on PotsPlace) and I think that's where it ends. I'm on meds already and if this is all within reach, I'll have to live with it. Which I will SURE do. I will live and ENJOY, every single minute. I have a very sweet husband who takes good care of me and my children are the best in the world (I think all the mommy's here will say that , but believe me mine, (10 and 14) are), I have a very good and caring doctor and PT who are trying the best they can, AND I HAVE YOU ALL, so what else do I need?

I'm sorry to be long again (I always have difficulties myself, reading long posts), but I wanted to thank you, because it feels so good to be supported by so many people, knowing they face the same things as I did! And also I want you all to know that life goes on and we have to enjoy it! No matter what, because it already is short!!!

Love you all,

Corina

[corina]

Oh and btw, I love Sally's suggestion for starting a thread about the most ridiculous statements we had to listen to. Without naming the doctors'names ofcourse! It would at least give us something to laugh about!

Corina

[ariella]

one more thing, maybe someone in the health profession can tell me if I'm wrong, but I read that since the ANS is so complex, it wasn't even studied in-depth in med schools until fairly recently. I seem to have better luck with younger doctors.

[Merrill]

Sally, this is just a guess, but is it possible that your doctor was making an analogy? That is, for a person with dysautonomia, carrying a stack of papers is like carrying something really heavy for a someone without this condition? That's what I thought of when I read your post ...

Corina, I LOVE your positive attitude. Your strong spirit will see you through this challenging period and take you to a place of better health. I just know it!

Peace,

m

[geneva]

Corina,

I am so glad to see that you have not let this bad experience cloud your thinking. You are so right about what is really important in life and it is wonderful that you have such a supportive family. My husband and I were just having a discussion last weekend about how blessed we are -- in spite of -- living with POTS.

Ariella, my internist said what you did, that most doctors hear about the ANS but not in depth and not about how to dx a patient with a problem or how to treat. It is just so rare for them to come in contact with someone like us, that they don't focus on it in med school.

[Ernie]

Hi Corina,

With the TTT result that you have it is sure that you have POTS. I don't know why this doctor said that you are healthy.

I can't wait for the day we will get medical recognition. Our life will be a lot easier. Not that we will be healthy but at least we won't have to deal with ignorant doctors.

Ernie

[sally]

Hi Merrill,

No unfortunately, it wasn't an analogy. I wish it had been because then at least he would have been showing some compassion, he was just being a smart ..... This particular physician is known for acting like this as I found out later by other people who have seen him for other things. I hadn't been diagnosed yet and he wasn't aware or interested in finding out why I was experiencing the symptoms that I was explaining to him at the time. Other than having a tremor problem he said there was no problem.....after leaving his office feeling upset and being dismissed by him and in fear of losing my job because at the time I was too ill to work, it wasn't until my children were starting showing the same symptoms/problems that we were diagnosed with the blood pressure problems and EDS. I'm just glad I didn't give up searching to find out what was wrong. It sad though that it took, oh lets see....about over 25 years to get some answers....how's that for patience? And they tell me I'm not a patient person....hehe

[Wendy]

Corina,

Sorry for the bad experience, but kudos to your hubby for sticking up for you! It is so nice to have someone who can speak for you when you can't defend yourself.

I admire the way you handled it. And I think it was the right thing to do. You don't need to waste your mental energy fretting about it either. I honestly believe that when a Dr who has a brilliant career (in his or her own mind) comes across something complicated, sometimes they just aren't up to the challenge, since they've never been challenged before.

BTW, I'd ask your PCP to exclude that doc's report from your record, if possible. No need to get that passed on to the next one. That happened to me and every subsequent doctor I went to see made a point of commenting that I didn't "seem crazy".

Cheers,

Wendy