Need advice on seeing new doc, please!!

[melly4]

Hi.I have moved from SC to GA 2 months ago, and now am faced with seeing a new doc. I had a really great internist in SC, but only after going through several very inconsiderate and undereducated docs. I went through the same with my oldest son, and we still haven't found a doc for him. We've both been through the "anxiety disorder" copout diagnosis, like I've read that so many of you have been through. And, as you know, it's a pain to get that removed from your records, and it stays with you and causes you misdiagnosis and discrimination when you have emergency medical issues. I've been told I had anxiety-related tummy troubles, when it turned out to be my gallbladder. I am now fighting my insurance company because I had to be taken by ambulance to the hospital after my head got slammed and pinned between a large couch and the side of a truck. The paramedic asked me what meds I was taking, and when he saw that Klonopin was one of them, he noted "anxiety" as my diagnosis, and the insurance company assumed that's why I called an ambulance and won't pay for the service. Anxiety has nothing to do with a cervical spine injury and a large scalp contusion!!

Anyhow, I'm seeing a new internist Monday, and I'm so scared that I'm going to end up with another condescending doc who thinks I'm a nutcase. Obviously, he'll have records from my other internist, but sometimes doctors don't care what another doc thinks. And then he'll see I take Klonopin as one of my meds and assume I have anxiety as a primary diagnosis. I don't mean to "doctor bash", but I know you all have probably been there. I would really appreciate any advice from anyone who has been in my shoes and had to start over with a new doc after leaving a really good one. Do I tell him everything I've been through, including the misdiagnosis after misdiagnosis? Or do I let him start anew? He's supposed to be wonderful, the kind that calls you at home to check on you. I may be in for a big surprise, and find that he's understanding and knowledgeable. I hope so. Thanks for letting me express my fear, and any advice is greatly appreciated.

Wellness to all and safety to those in the path of Rita,

Melly

[morgan617]

Melly, my tendency is to always be on my defensive, because that's where I usually end up. I am trying very hard not to do this, because I end up babbling stuff that reinforces pre conceived thoughts.

When I went into the hospital recently, I just decided I was going to keep an open mind and anyone could think what they wanted. I was so tired of defending myself. It went okay until a psych doc showed up and saw I have great benefits for therapy. I was blown off by the endocrinologist, but only because she didn't want to take on any more patients and was treated really well by the cardiologist.

So I am finding that if I'm calm and they know I don't really care if they think I'm a nut ball, they tend not to percieve me as one. Unless they can make lots of money off me. The more you try to explain, the more quagmired it seems to get. He may not have even looked at your records yet. There are a fair amount of doctors that don't read the chart (especially the good ones) beforehand, because they want to form their own opinions.

So I just reccomend (sp) you keep an open mind, try not to be nervous (I know so easy to say, so hard to do!) and let him ask the questions, you give short concise answers and see where it goes. Don't make excuses for why you take klonipin, just tell him matter of factly. Good luck, I'll be pulling for you and hope he's a winner in a world of well, not winners......morgan

[StandUpSitDown]

Hi.I have moved from SC to GA 2 months ago, and now am faced with seeing a new doc.

This is where, if you can get a diagnosis from a major medical center, you life changes dramatically towards improvement in these day to day situations.

For the average ER doc, or family physician, if you give them a complex case, there will be motivation to not deal with it, or to write it off with an acceptible easy disease. Because it is so much bother to treat the tuff stuff, or they are afraid of malpractice, etc. Any of a number of reasons.

But if you have a letter from Vanderbilt, or Mayo, or Cleveland Clinic, or Grubb, you've got this thing in your hand that your local doctor cannot ignore. And so you can force the real discussion, which is: "Are you willing to attempt to treat a patient with these level of symptoms." Put the question to them point-blank. With that letter of yours, they can't dimiss your physical ailment. So they will be forced to make that choice.

Be prepared to have a lot say "no" - but I'd rather get 10 no's, and then, finally, that 1 yes, instead of getting a non-commimttal response right off the back, and force doctor hopping upon myself.

Take care!

SlipUpStareDown

[Poohbear]

Hi Melly!!

I'm glad you were able to get an appt and get in so soon with an internist. I feel so badly that I couldn't help you more earlier in getting in with the "right" cardio.

I'm kinda in this same boat too and I agree with standupsitdown. I've had virtually NO problems since going to Mayo with my regular Dr's because they see the lengths I've gone to to get help and they see the report that Mayo has sent. I have not had the same luck with ER's and Hospital although they don't brush me off when they hear I've been to Mayo and they don't shrug stuff off as stress.

I am going to a new Dr this next week as well hoping to find a good Internal Med. Dr. that will take my case and help coordinate my care and handle some paperwork issues for me.

I think just like Morgan mentioned...TRY not to go in there defensive. Have you been diagnosed "officially" with POTS, NCS or some other form of Dysautonomia?

I'll share with you what my plan is (not that it's what will be best for you but it's all I know to offer)..I printed off some info from the main pages on this website to take with me to the new Dr. I plan to tell them upfront that I have a complicated medical condition and I need someone who is willing to listen, learn, research and coordinate. I explain up-front that often I have a need for more than a 15 minute appt slot and that at times there is a lot of paperwork/documentation I need. I tell them up-front that I do not EXPECT them to know much about POTS/NCS but I do need them to be willing to learn, talk with the experts if needed and work closely with me and what is working and not working for me. I ask them if they feel they can provide me with the services I need (understanding that some Dr's have a full load already and just can't take on a complicated case).

I think you will find that if you get in there with this Dr and talk to him a little, tell him your case is complicated, ask if he's willing to take it and work closely with you ....that in the midst of all of that you will get a sense to how open he is, how much he is listening and if you can work with him. If you don't feel good about his bedside manner or what he says then I WOULD NOT share all of my records with him. I would also (if the appt was going well) at some point say something like, "I'm aware there are not many Dr's who are familiar with my condition so I have some information I printed if you would be interested in reading it".

Good Luck and please let us know how it goes!

PS--How are your sons? Have you been able to get appt's for either of them?

[morgan617]

Just to clarify, I don't have any letters of verification to prove anything. Those are great if you've been to these places, but not all of us have. Not being defensive, just makin' a point...morgan

[Poohbear]

As Morgan mentioned, many people don't have these letters from Dr's to back them up. I'm so very thankful I do and I do recognize it's a blessing that I do have that.

That's part of why I was asking if you have been "officially" diagnosed by anyone or is anxiety/stress the only thing in your file. Because I think, unfortunately that does/can make a difference.

If you haven't previously had a diagnosis of POTS or NCS then you may have a harder fight. Prior to my going to Mayo I had a really good cardiologist who had done tilt table testing, I had ER records showing my heart rate would spike to 179 while lying down (sometimes even while sleeping), I had a one month cardiac event monitor that also showed consistent, frequent problems so all of that, in my case, was "backing me up"

So, if you don't have any of those tests then I guess that is where I would first start off....trying to find a Dr willing to order some tests.

I'm sorry if I offended anyone by my earlier post...that was NOT my intention. I do find it frustrating because I wish these clinics would accept everyone and I wish that Dr's who specialize in this would give good quality care to all of their patients (and that doesn't always happen either...even the "best" sometimes really fail and disappoint us) and I wish everyone could afford and have the means to travel extensively to the good Dr's. I keep praying and dreaming though!!!

[Dizzy Dame]

Hi Melly,

I live in Hawaii, so I haven't been able to go to any well-known places for a diagnosis. For along time, the ER and my old doctor pawned my sypmptoms off as anxiety disorder. However, I went to see a psychiatrist and talked with him for an hour and he said that there's no way my symptoms are related to anxiety. I got him to write a letter saying that I DO NOT have an anxiety disorder and I carry that letter with me every time I go to the hospital or go see a new doctor. It has really helped. So perhaps that's an option for you if you haven't or can't go to the bigger, more impressive clinics.

Hope that helps

-Lauren

[melly4]

Thanks, everyone, for the excellent advice. I think I just needed some encouragement. I've been through the fight before and ended up with a really great internist, who spent a lot of time and effort on my case. But now that I have two sons who are having seemingly related issues, I am finding myself very fragile emotionally. And that's just not like me at all. I'm typically very proactive and confrontational with doctors who try to treat or diagnose something they don't have expertise in, especially when it comes to my children. I definitely don't want to be on the defensive, especially considering that my 6-yr-old is possibly facing kidney trouble and we are waiting for lab results.

I, personally, have had a psychiatrist rule out any sort of psychiatric condition as part of my problems. He has stated that I have anxiety because of the symptoms I have which are related to some other medical condition. He wasn't sure what it was, but encouraged me to fire my GP and find a good internist. The internist mentioned dysautonomia right before I moved. My 12-yr-old son's cardiologist was a lazy jerk (excuse me) and didn't want to deal with him, probably because he was inexperienced. But he did have my son wear an event monitor for a month, and we got the results back after we moved. It showed sinus tachycardia all over the place. So, no, we haven't been anywhere "special", but I feel our records speak for themselves that this is not purely anxiety, only a cause of it.

I am planning to take some dysautonomia info written by a doctor who suffers from it as back-up when I go to my appt. and feel him out about seeing my oldest son. My younger son with the possible kidney trouble has been promptly referred to a specialist.

So, thank you all again for your advice. It has been invaluable in making my "game plan" for Monday. I also feel better and stronger. Like my husband always says, "doctors work for the patients, the patients don't work for them." I'll give this doc the benefit of the doubt, explain my symptoms, and listen to what he has to say. If I don't like it, I'll move on.

I'll keep you posted,

Melly

[melly4]

P.S. Maybe I'll faint in his office and he'll get the idea. Or, perhaps, his nurse will faint when he/she sees how low my BP is, and they'll faint!!

[morgan617]

Pooh, you didn't offend any one that I know of, you squishy little bear you....morgan

[faithinspires]

The only thing I attempt to do about these docs who don't get it is bring along articles and brochures and let them know most docs haven't heard of it either, so if they'd like to know more there's info in the brochures and links to websites for further info. (My regular doctor actually thanked me and looked up the websites on his computer...yay!)