Just A Vent About A New Doctor Visit

[misstraci]

I haven't been to any doctor except once since being diagnosed with POTS/NCS back in May, so, my mom suggested her neurologist to me. I wanted to go because I've been feeling extra bad lately and for some reason I'm convinced something else is going on or causing all these horrid symptoms. My mom has been going to him for a really long time (she's had seven meningiomas) and I trusted her that it would be a good experience. I was super excited for the appointment. I was hoping for another opinion, some good suggestions, maybe a new idea as far as a treatment I could try, maybe a test or two to rule out other things, etc. I had all my symptoms written out, I found ways to describe the things I've been feeling and I wrote those out too, I wrote out my questions and concerns and I also had a folder full of previous records that were not in his hospital affiliated records.

This was this past Friday afternoon......Right off the bat when he walked in, I could tell by his manner this was not going to be a good visit. He was cold and harsh, aka rude. He basically said that I had had plenty of tests and that whatever I had going on didn't seem neurological related. He looked at my list of symptoms I had wrote and listened as I described them to him and said "yep, classical syncope/pre-syncope, I don't know what to offer you, I'm not sure what you are wanting here." I told him how I am basically at the point where I can't drive because everytime I try now, I feel like I'm going to pass out or have a seizure or something. I even described it all to him and he said " Are you scared of driving?" and I say, no, not of driving itself but of passing out while I drive, so yes, I'm scared to drive. He says "Do you feel that you couldn't pull over to the side of the road in time.... before you passed out?" What the heck? Was he saying it was ok to drive feeling this way and to just make sure I make it to the side of the road before fainting, what as jerk. He is the third doctor who's said to me that" yes, you have a chronic illness and there really isn't much that can be done. Sometimes people just have to learn to live with their situation" So, in my mind I'm thinking....Am I seriously supposed to live the rest of my life feeling everyday as though I'm dying, um no, I refuse to live that way. He asked about the quality of my life and I told him how bad it ***** and he was just like, that's unfortunate, I wish it didn't have to be like that.

So, long story short. It was a waste of my time and money. Got my hopes up once again and was let down once again. Back at zero as far as who to see and what to do for myself. It's just frustrating and discouraging as I know you all know. I just wanted to share my experience. Most of my experiences have been very similar to this for example the one doctor who told me he knew exactly what was going on "post-partum depression" and this was when my baby was one and half years old.......really?. I'm always treated in a very demeaning manner and as if I have an anxiety disorder, etc. He asked that as well, "Are you feeling depressed lately? Extra stress? Do you think it could be anxiety?" Ha..... I said I've never heard that one before.

[Katybug]

I am with you, misstraci! I just got a call (Thursday) from the endocrinologist I was trying to see that my out of whack thyroid tests apparently aren't out of whack enough for her to see me. God complex maybe???? My T3 is 80 pts higher than the high normal and every woman in my immediate family has either Graves or Hashimoto's! She sent my PCP a note to do some other tests and then she'll re-evaluate and decide if they will honor my appt. Like I really want to see this lady now. So I will be finding a different endo that wants to actually be a healer and not just a heel!

I hope you keep looking for another doc too! They are out there, they're just not easy to find.

[rubytuesday]

My cardio made me go back to my neuro to R/O anything else when he dx'd POTS. I hadn't been there for 6 years as she saw me regularly in trying to control migraines and fibro pain. Actually only good (success) was the DHE infusion for a month when in status migrainus for 2 months. When I returned for this visit (6 weeks of waiting) the office had not bothered to pull my old records and the neuro could only vaguely remember me. Then she 'had to go check MRI/MRA brain + neck' that was done 2 years earlier when I was hospitalized with syncope and that I told her was interpreted as normal with me to come back for her to see me again, when she told me otherwise she couldn't find anything (altho she had to hold her arm out for me to walk on heels and toes) and I had filled out on their new patient form that I had fine tremoring in the hands, difficulty swallowing, weakness in the legs and cognition problems. She did ask me to let her know whatever the cardiac specialist at UTMC finds out as 'we doctors are always learning'. She also offered to try me on Mestinon (used for Parkinson's?) but I declined saying my cardiologist had me on that but took me off of it and did not want any meds interfering with his eval. I didn't want to go but I didn't want to seem as if I was not compliant (lest why would I not follow my cardiologist's instructions).

I loathe going to my endo too. Have been associated with him/loved him when he cared for me with my pituitary surgery--but I think either I got stale or he did. Every time (cardiologist sent me back and PCP tried to send me back) I have to go back, I cringe. I tried another who was only an hour away but he was worse than the one I had. My endo would tell me I needed this test or that (more complex with timing/administration of things/blood draws) but when I would go back he wouldn't mention it and if I asked, he'd say I didn't need it (when nothing had changed).

We only have 1 neuro office here. I have so many specialists that are 1,2,5 hr drive (and back) that I hate to keep searching. I was afraid I might be starting Parkinson's or something but was just dismissed as 'normal findings'. So I just always tell DH if I die, have autopsy and if they find this or that--go back and sue that doctor. (And I am not a 'sue' kind of person).

I hope you find a good one who takes you seriously. I called my neuro back and asked that she order sitting MRI for my 7mm Chiari I to see if that might be part of this. Her office calls back that my Chiari (supine) wasn't significant so she didn't understand why I needed one--how it would be coded to get it authorized by ins. and even where they do them. I gave her office the Chiari Institutes website and the name of the imaging center 2 hours from here (I'd done my homework) that explains the significance of sitting MRI's. She never called back. I even suggested to her office girl that I might need to seek out a neurologist more experienced with Chiari's and EDS. The girl insisted that I shouldn't do that, that she'd give message to neuro. Neuro never called back (no surprise).

When no measures were controlling my migraines, this neuro had kept telling me she was going to inject Botox as soon as approved. Everytime I asked, approval to do procedure was still pending, or they were waiting on the drug rep to come, etc. and never any Botox. I had a neuro I'd loved (altho I find a lot to have superiority complex) who was also with me after pituitary surgery but when our ins. plan changed, their neuro center was not in network.

I know what you mean about waste of money but I had to go back to mine to be told she'd looked through 'some' of my old records and reviewed the MRI/MRA and 'nothing'. And when I got there for the first visit she didn't even know why I was there (when my heart doctor in same building had faxed her office his referral--I checked). I'm just happy I didn't have to go to big city to waste those 2 'specialist' co-pays, plus my time and travel.

I wish you calm and peace. It's frustrating because who knows our bodies better than ourselves?

[misstraci]

Katie... that stinks, I wouldn't want to see her now either. I will keeping looking for someone, I hope we both find someone good in the future!

rubytuesday...... my goodness. So, at least I know it's not just me who gets the not so fun experiences. Where do you live at? Or what big cities are near by? We have tons of doctors here and I feel like I've seen my share but I just keep picking the stinkers. I think, especially since you already have something such as chiari, they should not decline the sitting mri or anything that could further look into the situation. None of this comes easy I suppose. I think you guys for writing and sharing your experiences with me, it makes me feel better. Peace to you all as well. And yes, only we know our bodies and I hate that no one believes what I tell them about it.

[sue1234]

**roll eyes**!!! Been there, done that. Isn't it so demeaning to be treated like that? It seems like I go to my first appts. with new specialists, they sometimes are very good on the first appt., then quiet, evasive and almost cold on the second(and last!) visit. I don't know what happens between the first and second, but they kind of act like there is nothing to be done. I've had the "you need an anti-depressant" thrown at me so many times, that must be the standard of care when they don't know what to do. I've had a one neuro tell me POTS is just so new that they don't know much about it and, sorry, there's nothing we can do. I've had another neuro do a head and neck MRI, tell me my spine is impinging on my cervical spinal cord in 3 places--but, just wait while technology and surgery improves through the years to possibly have anything done. Have a cancer marker high? Insurance just denies a scan to detect where it is. And, go back to the doctor for a repeat office visit in 3 months! Okay, why do I have a cancer marker high and I have to sit on my rear for the next 3 months???

I get so tired of it all.

[HopeSprings]

Traci - Oh how I know the dissapointment. Bad Dr's visits make me SO depressed. You have that little glimmer of hope beforehand that maybe this Dr. will be the one and then you get totally let down. I'm sorry. May your next Dr. be more knowledgable and kinder.

Sue - what happened? I've been waiting to hear the next step after those blood results? You can't get the scan??

[kmichaelson]

I'm so sorry you had to waste your time, energy, hope, and money visiting this doctor! I can totally emphathize with you. It's so discouraging to prepare for an appointment and get our hopes up that something can be solved or helped, only to have our symptoms minimized and to be told there's nothing to be done.

I can't believe the doctor asked if you could get over to the side of the road--like that makes how you're feeling okay if you can pull the car over every time you feel awful!

[toddm1960]

I've said for a long time 95% of doctors are worthless, 4% are ok as long as you don;t have anything serious. It's that 1% we need to find. Just keep firing the bad ones and move on, don't waste your time or energy on them......they sure don't use any energy to help us. Good luck with your search and keep us updated on how it's going.

[rubytuesday]

Katie... that stinks, I wouldn't want to see her now either. I will keeping looking for someone, I hope we both find someone good in the future!

rubytuesday...... my goodness. So, at least I know it's not just me who gets the not so fun experiences. Where do you live at? Or what big cities are near by? We have tons of doctors here and I feel like I've seen my share but I just keep picking the stinkers. I think, especially since you already have something such as chiari, they should not decline the sitting mri or anything that could further look into the situation. None of this comes easy I suppose. I think you guys for writing and sharing your experiences with me, it makes me feel better. Peace to you all as well. And yes, only we know our bodies and I hate that no one believes what I tell them about it.

misstraci.

Thank you for your kind words. We can certainly empathize with the frustrations, the aggravations, the stigmas attached, trying to put label of depression or anxiety as a quick answer (which is why I do not go in complaining of depression or anxiety and take no meds). It was a long process with the fibro and some docs still think that's another 'in your head' or 'malingering' thing--nothing real.

I agree with Todd--we have to move on in this journey. Forums like this have given great leads in who/where to go but we can't give up the search. I'm just not ready to pursue a neuro in city when I have 2 new hemeoncologists in city about 2 hours from here coming up. I prioritize what is most pressing and what can wait. I've learned to have patience. When we are vailidated by experts who are well versed in our conditions, and can be vindicated, it is rewarding though. My PCP told me she always thought I looked rheumatoid (altho tests were always neg). I told her maybe she was looking at the face/body of EDS. She said 'I don't know. I've never seen it. It's so rare--or maybe it's underdiagnosed'. But she has stayed with me, especially since specialists are so lacking here in the what once was the hog capital of the Buckeye State. I've learned that when I go to a doctor, who has my records, that I still need to ask if that is from the dysautonomia or the EDS or if I can have this with all the drug allergies or with all the other meds I am taking, and ask if it is time for a re-check of something. I usually pose it like 'would there be any beneffit from doing . . .' (mentioning a test) followed by 'since I am having. . .' (mentioning the symptoms). That way it is as if it is their idea and doesn't sting the ego.

[sue1234]

Naomi, I hate to "hijack", so a quick update. I called Friday to let them know it's been a couple of weeks and I hadn't heard anything about my PET scan. The nurse said, oh, they denied it. So I asked, well what do I do now? She said just to come back in for my scheduled appt. in February, that the doctor will think of something else. I received a letter from my insurance yesterday stating my PET scan was denied because it is "experimental" treatment. ***?! It's just a darn PET scan to look for a tumor, not treat anything. They act like the diagnosis is a sealed deal(it's not). I have read enough for the last few years on neuroendocrine tumors to know that way more labwork needs to be done.

As far as waiting until February, uh, I don't think so! Tomorrow I'm calling the "expert" a few hours away from me to get an office visit and get all the more in-depth tests done. "Thankful" will know the specialist I'm heading to!

[janiedelite]

Hope it goes well! I'll be going to accompany my mom to her appt with him in February. You'll have to start a new thread and keep us updated!

And now.... back to the original topic!

[HopeSprings]

Sue- I swear it's always something! Glad you have a next move though - keep us posted.

[roxie]

I'm sorry you had to go through that. Many dr's are insensitive and it can really make you feel bad about yourself.

This isn't exactly the same but I had a bit of a bad experience recently, too. I'm going through ANS testing & showed up for some of the nerve tests in my wheelchair.

The guy comes out to get me & immediately says "you have to walk"

And my mom was there and is like "she cant. she passes out"

He's  all "you pass out? When was the last time"

Me:"last week"

Him: "we leave wheelchairs in the waiting room"

And then my mom said something I don't remember what it was & he's like "that's you own wheelchair" 

So then finally he let's me  "wheel" around the long way. He  tells me mom she has to leave the room &  she says "here's your water"

And he  waves his hand in the air "no water in here! No water" & closes the door.

Then, he starts asking me all these questions & I find out he's actually a dr.  while getting me set with the sensors,  he says "you use a wheelchair because your afraid of passing out"

Im like "no, I pass out"

And he just kept asking me things (I realize now he is a dr& prob had a point in the questions) but  I wanted to clobber him with the clicker he gave me! but ya know he controlled the currents on the sensors.

By the end he was a little better. he was asking me about growing up w/POTS & how I didn't get to do much and he said "that mustve been very hard for you" I had to look away because I was about to cry & didn't dare in front if him!

Oh in the middle of this he says "have you ever had a tilt table "

Me: "yeah, & I have another next week"

Him: "I do the tilt table ". And he was like excited, (maybe because he is a dr & wanted to see what would happens?) When I left he yells "see you next week"

I get in the car & my mom says "what a weirdo!"

The next week comes & he turned from obnoxious guy to a dr, much more professional! Im guessing he went back & read my records.

During the test he kept looking at the monitor and making these strange faces. After it was all done, he's standing over me & says "all these dr's did they tell you what this is?"

I thought I said "POTS" 

But he says to me "they are surprised. Well I have everything documented and  printed. He will see it" (referring to the head dr) he placed his hand on my arm a little and says. "he will tell you what this all is" 

This sorta turned into a ramble.

Misstraci, it sounds like you did everything right in preparing for your appointment.It really stinks you had this problem.  I think all of us here have had our runs in with insensitive dr's, unfortunately. 

[misstraci]

sue... yes, very demeaning to be treated in such a way. Anti-depressants are definitely the "cure all", for those dr's who are done searching for you. I'm sorry to hear about your medical issues going on and that they denied your test. That stinks. I hope the expert you are talking about gets you in and seen and takes care of everything.

naomi.... you explained it exactly.

dizzy ......thank you. I know you feel my pain; what I'm going through. I hate for our symptoms to be shot down as if we are hypochondriacs, etc. Also, yes, he really said that about pulling over before I fainted :0

todd.....thanks. I'm definitely going to keep looking and searching and will give updates. I like your 95% 4% and 1% , very true!

ihatebananas..... your story made me laugh!!!! I'm sorry they treated you that way

[Libby]

misstraci - Ooo, the thing I hate most is the arrogance. When they speak to you like you're some uneducated nitwit who doesn't know what she's talking about and is obviously exaggerating her symptoms. I wish there were a way to pay them based on how helpful they were (or at least tried to be). Maybe we'd see a little improvement in their attitudes if their wallets were at stake . LOL, wishful thinking.

I received a letter from my insurance yesterday stating my PET scan was denied because it is "experimental" treatment. ***?! It's just a darn PET scan to look for a tumor, not treat anything.

This is REPULSIVE. PETs have been used for DECADES to find possible tumors and identify areas of increased cellular proliferation. I am so, so, so angry for you.

[sue1234]

Oh Libby, I definitely think "paying for what you get" is an excellent idea! I've seen plenty of doctors that didn't even deserve $1 for the 10 minutes they spent trying everything way they could to keep the appt. from getting too in depth. I guess they had a line of other patients in a string of rooms to get to.

[kmichaelson]

Oh Libby, I definitely think "paying for what you get" is an excellent idea! I've seen plenty of doctors that didn't even deserve $1 for the 10 minutes they spent trying everything way they could to keep the appt. from getting too in depth. I guess they had a line of other patients in a string of rooms to get to.

I know! I love Libby's idea! That would be so satisfying to only pay doctors what they're worth. That would be great if they were motivated by quality rather than quantity.I nominate Libby to reform health care!

[sue1234]

I have to admit that I now have one great endo, just that he's somewhat hampered by insurance.

[jenglynn]

I feel for all of you. Some of your experiences are just awful. Actually, beyond awful... Just simply unacceptable. And I am so sorry that you have been treated that way. I have had my share of condescending doctors as well. Right now, I feel like I have some decent doctors, but my problem is that because of the nature of our condition, we have to see so many different types of doctors and there are so many times that I feel that they don't work together. I am telling the same story over and over again (and this is all in the same hospital). Please, review your notes, makes your consults and get your ducks in a row. Or I get the "Well, I don't know why Dr. X is sending you to ME. This is not MY problem." It can all be so frustrating because it is hard enough to be chronically ill but trying to handle all the coordination is a full time job at times.