I am so angry!!

[Deb M.]

Sorry if you guys have already posted on topics like this before, but...

I am so MAD!

I saw a second neurologist last week for a second opinion, since the first neurologist now has no clue as to what's wrong with me except a possible dysautonomia. This second neurologist sent her intern in to speak with me first, discussed my case with him and then came in telling me that it's all in my head! That I have anxiety and it's causing all my symptoms. I've been diagnosed so far with IST and this doctor says to me, "Well, what's causing your heart to race?" And of course I said, "I have no idea." (Isn't that why I was there to see her???!!) Then she told me that anxiety causes this problem. She didn't ask me any other questions...barely talked to me about my symptoms...and just assumes that's the problem. Afterwards, I just cried out of frustration.

My dad is angry too...he's a psychologist and would know if I had an anxiety problem!! I live at home right now and my dad sees me every day!

None of the other doctors have even suggested anxiety as the root of the problem, except that I was possibly starting to make myself slightly anxious because of all my symptoms that come on unexpectedly.

I am a very happy person in general. And very calm. I KNOW that the cause of all this is not anxiety!! arrrrgh!

Then this doctor tells me that I should cancel my appts with the endocrinologist and the neuro-opthamologist because seeing them would be pointless since all this is due to anxiety. Thankfully, my primary doc still wants me to go, but now I'm worried that she'll start to believe this doctor, since she is supposedly one of the best in the system.

She totally acted like I wasted her time!

Sorry to vent so much, but I'm so upset about this because I know it's wrong...

Thanks for reading this...

Deb

[MightyMouse]

Deb, I'm so sorry that you're living through the aftermath of such inept care. Sadly, your experience is fairly common, so you can take some solace in that.

If you feel inclined, perhaps you and your father may send a letter of complaint to the facility that allows these folks to "practice" on you so poorly.

Nina

[Sunfish]

deb-

gggggggggggrrrrrrrrrrrrrrrrrr....i'm SO sorry that you had to deal with such a doc. but am glad to hear that your PCP & family is behind you. i agree with you & your PCP that you should keep the other appointments, and as your PCP seems to be in your court, perhaps it would ease your worries some to articulate your concerns with her about losing her support too? not a major discussion but just a mention. it might help to reassure you. and having been hospitalized at one of the "top hospitals in the country" - post-diagnosis - and being written off as a psych case b/c they didn't understand all the wacky things going on with my body, the fact that this doc is "tops" doesn't mean a thing. in fact, in my experience it seems to be the "top" docs who often have the hardest time acknowledging that there are things they don't personally understand.

regarding anxiety, you seem to have a healthy approach about it...such that you realize that you are a bit anxious about all the health craziness - who wouldn't be?! - but also know that this isn't the root of things. it always amuses me when i'm asked in a hospital if there is anything i'm anxious about (as a general screening question.) i'm always like...uh, yeah...i'm in the hospital, i feel like crud...where should i start?? doesn't mean i'm losing sleep over the worries, but i don't know too many people who enjoy illness, hospital stays, etc...

nina's suggestion at a letter is a good one too...

hang in there...

:-)melissa

[Ernie]

Hi,

I can totally relate to your feelings. I am sorry that this happened to you.

I would certainly keep the appointment with the other docs.

Ernie

[Dawg Tired]

My new response to doctors like that... "Yes, anxiety, and YOU are causing it!"

I agree you should write a letter to the healthcare system that this so-called "doctor" practices in. There are entirely too many who come up against something they don't understand so they call it the patient's fault. Keep the other appointments! It was finally a pulmonologist who helped me.

[sonshine456]

this makes me so mad. I was told my problem was anxiety for a good 3 years...a little over. Then I went to see a cardiologist who ended up doing an Electrophysiology study and then an ablation and came out of there saying "we were able to set off the tachy so easily you must have been dealing with this everyday" UH, YEAH. and then after the ablation came the POTS stuff. I'm also a very calm, laid back person and dr's thinking that anxiety was what was causing my stuff is what caused me the most anxiety...not the illness. In trying to figure out what was wrong with me I got the point where I knew that I wasn't going to die from this and it wasn't doing damage to my heart. At that point I was able to explain to dr's why I wasn't having anxiety about the stuff. I just told them that when I get the weird stuff going on with my body I know it's not going to kill or hurt or me (plus i had been dealing with it for 3 years..i did my freaking out the first year I didn't know what was going on) and that I could handle the not feeling good part as long as I knew we were moving forward in trying new things and looking at new things. I think it would be a very good idea to go to your primary and talk to her about your concerns and frustrations. it's hard cuz you don't want to look like you're trying to hard to prove anything but on the the other hand...you know your body and you've gotta be straight forward and make sure they are hearing you. If this dr isn't hearing you...change dr's. I've "fired" a few when it's been clear they're not listening to me and have made their mind up before even seeing me. I think if dr's can't pin point what's going on right away...it's anxiety. I feel your frustration (obviously :-) )

[Jenn202]

Deb - I have been there...its the worst feeling! I am so sorry you had to experience this. But do like a lot of us do..... Say "adios" to that experience and on to better ones.

Its great that your PCP is in your corner.

I just had a recent "Bad Dr" experience... I know its hard, but just chalk that one up, and look forward to the next Dr Visit....

Like I always say there are a plethora of bad Dr's out there and a handful of good. Eventually you will run in to the good ones who care and understand.

[Guest Julia59]

Deb,

Hang in there. I also went through the rude ignorant doctor syndrome. Eventually some good ones came into the picture and I started getting the help I need. I still run into another rude and ignorant doctor once in a while, but now I feel confident enough to stand up to them and let them know I won't let them assume my physical problems are caused by anxiety or a psychological problem.

I would say a lot of us who have dysautonomia have "anxiety" due to the insensitivity of some of the medical professionals-(if you can call them that) they come across.

I am also glad to see your PCP is in your corner. That is a good start. Now you just need to find a good doctor who specialises in dysautonomia---or who has a good understanding of it.

Have you already been into the physician listing on this web site? This is the link below.

http://www.potsplace.com/physicians.htm

I once saw a neurologist who told me everything was in my head----my POTS, the pain, my cervical spine problems, my cervical/cranial instability and the EDS. He told me I need psychiatric help because I manifested all of it to the point of creating my own pain. All those doctors who diagnosed me with all of this must all be wrong-----I don't think so. A couple of the Docs retested to confirm the diagnosis---just to make sure they were not wrong.

This Doctor was so full of himself that he was sure they were ALL wrong----- and only he was right.

I was so mad at him I told him off on the phone after told me I was perfectly normal, and I could jump up and down on a trampoline. I asked him if I could jump on a trampoline specifically because that is one of the things that I could never tolerate all my life, as I would get a very nasty sensation/pressure/electrical feeling near my cervical/cranial junction. I couldn't even jump on one of the mini trampolines---in fact that was worse.

When he told me I was OK for the trampoline----that is when I knew he was the one who needed psychiatric care----and I just went off on him, and then I wrote a letter to the president of the hospital he was affliated with. I was surprized to receive a response from the president----APOLOGIZING.........

Just hang on----your confidence in getting the proper medical care will grow as you get more support.

Wishing you the best.

Julie :0)

[icthus]

Deb - You said some doctors suffer from RIDS (rude ignornant doctor syndrome). I like it. I'm using it. I've got some RIDS doctors that I've gotten rid of, too! Thanks for the idea of a new and unfortunately appropriate acronym for some of them out there.

[DSM3KIDZ]

I'm sorry your going through this with your doctors. I get so angry over this, so many time soo many of us have been in you position and it stinks. I have never had anxiety until I started dealing with doctors on a regular basis. They are 1/2 of my problem so they should pay 1/2 of my medical bills.

Well I'm happy you have your PCP in your corner.

dayna

[Evie]

Oh this must be really annoying. I have never had a dr say out loud that its in my head. Sometimes i think they may be thinking it and they kind of brush you off by offering no suggestions or reasonings as to why i may be the way i am and they just wave me out the door. I have had the impression that some people in my family also think it could be in my head. (not people who see me every day ... just the ones who see me occasionally and look normal)

What are the differences between anxiety symptoms and POTS/OI .... do people with anxiety faint? I know they can get heart palpitations and dizzy/nasuea etc.

I know i had a nurse who was taking my blood. .. i warned her i was prone to fainting. .. she told me it was all in my head (in a nice way) ... i started to go dizzy after the third attempt to get a vien ... she asked if i was having a panic attack .... i told her i was fainting (i was already laying down) then my whole body started convulsing .... she didnt tell me it was in my head after that.

However i hear that you can have such reactions from things like anxiety. It must be tough for drs to distinguish.

It must be even worse for the people who actually do have anxiety.

[Marie]

Deb M. - I am sorry to read that you have been treated this way. I experienced the same problems. It took 8 years and 9 doctors later to get my asthma diagnosed. It has taken me 6 years and a misdiagnosis of thoracic outlet syndrome before I get my POTS, Raynaud's, and autonomic neuropathy diagnosed. I am 42. They are still doing more tests to see if I have some other syndrome. I had many doctors tell me it is stress because I am a middle school special ed. teacher and have 3 kids. The biggest perpetrator of that attitude was my OB. I kept going to doctors - I am fortunate in that my insurance does not require referrals. I eventually found a family doctor that believed I had real symptoms and insisted I keep going to new doctors. I have a sister with mental illness, so I often wondered if I was going - "crazy!" I suggest you read all you can on any possibilities for your symptoms. The doctors tend to stop patronizing you when you go in there knowing almost as much as they do and you are able to ask questions. When they do lab tests, find out what they are testing for and look it up on the internet. This will also lead you to illnesses that may cause your symptoms. One of my sisters almost died from neurofibromatosis on her spine. Her doctor told her for years she was overweight and needed to exercise even though she had lost weight and exercised! One day she woke up paralized and her organs were shutting down. The hospital just got an MRI machine. They said she had 2 days left to live before they found the tumor. They did the surgery that saved her life. Do not give up on being an advocate for yourself! Maybe your father could go to your office visits with you. Best of luck to you- Marie

[joyrose]

Dear Deb and everyone else who has suffered while looking into the eyes of a doctor,

I understand the pain and lost hopes of telling a neurologist or other specialist my whole story.

"Ah" "Umm" "Yes" He listens. I think..

Then he does the exam and when I remind him that my neck can't do that or my balance is way off (don't you remember? I just told you)

Afterward I wait. What's he going to say? I feel like a puppy. Am I a good patient? Does he like me? Does he believe me? How about my pain level? I hope I rated it so I was believable.

Well, that doctor finished up and said that I'd probably feel better if I was more active in my community. Depression was probably a big part of the illness. Have I meditated? We could start on Tylenol round the clock for pain (!!!!!!) and evaluate in 6 months at my next appt. By then he'd look at my X-rays (that had been in his office for weeks)

My eyes filled up with tears. He probably thought I was full of speechless admiration. That was the end of our relationship. I did meditate--about him on the way home as I passed the community center!

You know yourself, your mind and your body.

It is humiliating and it can intensify all of your pain when it is thrown back in your face. But remember, nobody can ever take away your dignity.

I care. -Deb Byrne

[Rita]

Deb M

I was just reading your post and I t reminds me of what I deal with when I see the nero docs. The only difference is they admit that I have an autonomic dysfunction, but for some reason they don't want to help as afr as treatment is concerned. They always tell me to stick with the cardiologist. I really don't know why I always thought that autonomic meant something wrong with the brain not the heart.

Sincerely,

Rita s

[hockeymom]

It is so sad and incredibly frustrating that this is such a common theme for so many dysautonomia patients! Unfortunately. it seems that most dysautonomia patients have had at least one such experience. My daughter was diagnosed with POTS earlier this year, and we have most definitely been down this path. We had one experience in particular that was very bad.

On the other side of things, that makes us even more grateful for the wonderful doctors who do understand dysautonomia and have experience treating it and for those, too, who have not been familiar with it but who have been willing to open their minds and learn. I have the utmost respect for a couple of doctors we have seen who have been more than willing to take information we have given them, learn, and accept and understand a bit about what we are dealing with.

Hats off to the "good guys"!

Cheryl

Deb M

  I was just reading your post and I t reminds me of what I deal with when I see the nero docs. The only difference is they admit that I have an autonomic dysfunction, but for some reason they don't want to help as afr as treatment is concerned. They always tell me to stick with the cardiologist. I really don't know why I always thought that autonomic meant something wrong with the brain not the heart.

                                                                    Sincerely,

                                                                Rita s

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[sallyann]

i know what your going thru ,docs told me anxiety at first,awful funny me AND MY daughter were having exact same anxiety at the same time.ha ha

sallyann