Crackpot Diagnoses & Cures

[Ernie]

Hi,

I don't like fainting for attention because my ego hurts.

I remember one of my numerous times I fainted at university I was so humiliated that when the ambulance came I asked them to put me in the body bag and to zip it! I did not want anybody that knew me to see my face. The EMT put me in the body bag and they unzipped it when they closed the ambulance door.

Usually I try not to get attention but if I really want some I dress nice and I get on the dance floor and ballroom dance with my husband.

[ajw4790]

Ernie,

They actually put you in a body bag? (Or are you joking?)

I can't believe they did that! Wouldn't that be scary? I guess it would really help though disguise who is in there!

[summer]

Thank you so much for sharing your experiences in this thread. As someone just beginning to hear some of these insulting diagnoses in the past year, it is nice to know that maybe someday I will look back on them and laugh!

I can't help but ask, did any of you have opportunities to "educate" these doctors after finally being properly diagnosed?!

[dezyrae2]

Boy this thread makes me feel better. I just got reports from the hospital to take to my ep and i read the cardiologist report and it said severe tachy with position changes. sounds like pots huh? then he followed by saying she seemed a little too happy almost hypomania and maybe she should have a psych eval. you should have seen this doctor. he told me that there is no such thing as pots and i made that up and when he was checking my pressure he held his head upside down to read the monitor. i think maybe he needed to get a psych evaluation. hahaha

[juliegee]

In response to Summer's query, "YES," I did have a chance to educate my son's GI who most definately ate humble pie and became much more helpful. At the time we sought help from this "specialist", who was 75 miles away in Atlanta often requiring a hotel stay (as my son was too sick to travel); we were repeatedly told that my son was ill (unable to eat & fainting) because he tried too hard in school (A student with 100% attendance prior to leaving due to illness) and he was mentally ill. The only reason that I brought up Mack's school achievement was to illustrate how severely the illness was affecting him. I wanted this man to see who Mack was before he became so sick. This man, however, was adamant that Mack's personality was causing all of his problems. VERY frightening as Mack's weight became so precarious I thought he was going to die.

Thanks to help from another parent from another support group like this, the wonderful docs at Johns Hopkins were able to DX Mack with a GI neuropathy caused by his NMH/NCS. (A local psychologist had previously ruled out any mental/emotional disorders other than distress caused by lack of help from the medical community!) When Mack later came down with a GI bacterial overgrowth (common with his GI condition,) we once again sought help from this same GI. It was somewhat satisfying to share Mack's DX with him. He looked very chagrined and promptly treated Mack correctly. Still, to this day, it haunts me that I didn't more assertively educate this man. My heart aches with worry about his other patients....

Julie

[JaneEyre9]

We can't win-- Desiree is accused of needing a psych eval for being "too happy," Dizzy is accused of being suicidal for being "too sad"! What the heck!?

Seriously, the main problem here is the particular doctor's inability to be humble and say, "I don't know." Scary words for a person who spent 21 years in school and many additional years in training. Not knowing isn't a posibility for them, so it's automatically our fault. Thank goodness not all doctors are like this and remember that they are human and don't know everything.

Dizzy-- As a side note, it is HORRIBLE beyond words that your religious beliefs were called into question by a medical professional. First of all, it's not a doctor's job to talk about religion to the patient, and second of all, even if that was ok to do, people of great faith get sick all the time. I wonder how that doctor felt about Pope John Paul having Parkinson's-- did he not pray enough? ;-) Health is no sure sign of piety, nor is illness a sure sign of wrongdoing. We are all subject to suffering here on earth.

[Ernie]

Ernie,

They actually put you in a body bag? (Or are you joking?)

I can't believe they did that! Wouldn't that be scary? I guess it would really help though disguise who is in there!

It's no joke. The EMT really put me in a body bag. Before using the bag they asked me "You know what the bag means?" I said: "Yes, But I prefer people thinking that there is a dead person on the stretcher than people knowing that it's me!" So the EMTs agreed to use the body bag. I asked to zip it up to the top of my head to make sure that nobody could see my head. I was not afraid at all. Quit the contrary I felt secure inside the bag!

It was 20 minutes before a mid-term exam and I had a gastro enteritis and was rushed to the ER and stayed there for 2 days. I had to postpone my mid-term to the next week.

[Ernie]

I can't help but ask, did any of you have opportunities to "educate" these doctors after finally being properly diagnosed?!

I tried to educate the doctor who told me that I pretended to faint and that I was so good at it that I convinced myself. He had only tried Paxil and Florinef and he had told me that there was no more medication for syncope. So I went to see Dr Grubb who gave me Midrodine. When I came back from my trip I told this internist that Dr Grubb did not believe that I was pretending to faint and the internist said that it was because I lied about my life to Dr Grubb. He also said that he was going to prescribe Midrodine as my next medication. He was so insulted that I had gone to Dr Grubb and that Midrodine had decreased the syncope from every time I stand to 3 times a week that he told me he did not want me has a patient anymore.

[Ernie]

Hi,

I hope I am not getting you bored but I just remember another good one.

When I went to a great hospital where there are reknown researchers I presented them with my NIH reports and other TTTs and different medical proof I have to "prove" that I have a physical disorder. Well this time I was told: "You stole the medical file of another patient and you put your name on it."

They then sent the psychiatrist and diagnosed me again with conversion disorder. I couln't believe it. I had my medical proof and they accused me of faking my medical file. There is nothing that these doctors can invent to destroy our reputation.

[dizzygirl]

OH my word!!!!!!! i have to ad my adventure today with a crack pot dr!!!! I'm not sure weather to irritated and mad.. or to laugh at the ignorance and stupidity!!

Ok.. so i've posted on here alot about ym severe fatigue and drowsiness and stuff.. so i had 2 part sleep study then i had to keep a sleep log for a month...

So i went in today...

Dr. said You have some apnea events.. not enough to do cpap.. i was like OK good...

then he said the reason why you are so tired is b/c your not getting enough sleep...I was like did you LOOK at my sleep diary?

He said you need to sleep about 9 hour a night.. I said well i sleep about 11-12 a night... he said would you like a sleep aide to help you sleep?

i said NO going to sleep is not my problem! I can not stay awake!!!!! I'm sleeping on the average of 16-20 hours day! give ro take depending on the day.

He said well you have excessive day time sleepiness.. you fell alseep very quickly for all of your naps.. 30 seconds to 1 min 30 secs. to fall asleep for each nap.

Then he again offered me a sleeping pill to help me "sleep"

I was getting irritated so i left the rm. and asked for my sleep study result to take with me..

Whoever heard of giveing out sleeping pill.. when you allready can barely hold ur eyes open!!!! i tell ya some of these dr's out there really concern me.. wait i take that back they out and out scare the heebie jeebiezzz out of me!

[Maxine]

Ernie,

How sad these times must have been for you, and no doubt angering. Did this doctor not think you have a right to be respected as a human being? Obviously that doctor needs to seek psychiatric help for his delusional thinking.

I think if a person is going to go into medical school they should be required to take classes on how to conduct themselves as human beings, and not figures of arrogance. Being a doctor should be humbling, not a position of power in which they can humiliate, or desecrate the human charachter. If I had the lives of human beings in my hands, I would feel like I would be stricken by lightning if I talked to a patient that way.

DIZZ! How stupid can a person be? Uggg--------where did he get his medical degree from???

Maxine :0)

[Ernie]

Hi Maxine,

It was a very difficult time. I was so humiliated. The doctors discharged me without testing me any further than just the basic tests so I went there for nothing again. One of the nurse told me as I was packing my stuff: "Don't worry about it. That's the diagnosis doctors give here when they don't know what the patient has." So it made me feel a bit better.

I refused the consultation with the psychiatrist because I knew that they would conclude conversion disorder whatever I said so the psychiatrist concluded conversion disorder because I refused the consultation!!!!!!!! So I was in a loose-loose situation. I think it took me a few weeks to get back my self-esteem. I called NIH to tell them what happend and they couln'd believe that some doctors believe that I faked their reports. It's the first time they had heard a patient being told that.

Frankly if I would want the medical file of someone else I would want someone's who is healthy - as well as is body!!!!!!!!!!

[taylortotmom]

Okay- I'll give you two of my all-time favorites:

I was told my rectal bleeding (excessive) was caused by stress- now, I have heard of stress reactions but I think I would have picked something a little more dainty than that!

I was told to learn biofeedback to increase the circulation in my legs to keep me from passing out. Okay, legs do your duty- fill with blood- and keep me upright! Does that mean you can think your way out of a heart attack??? My husband was dumbfounded- he was there with me at the ER when that quack doctor told me that.

This thread actually makes me quite sad- the only thing insane about this disorder is what we have to go through to get adequate health care

BUT, I have a fantastic doctor now and hopefully, those days are behind me

[kitchmill]

Just add me to the "too skinny, eat more salt, low blood pressure is GOOD" club. That's what I've been told all of my life.

I can't believe some of these doctors. I'm so glad that I finally stumbled onto someone who knew what I was talking about!

[jump]

Well, I had a great suggestion from my doctor today. Actually, it probably would have made me really angry except that I knew I could come here and share it with all of you -- I am so grateful to have a place to share this stuff and be understood!!!

I saw my cardiologist today and I told him that the beta blocker he gave me seemed to be helping some but not completely. I still have an orthostatic pulse in the morning (more than 30 diff. between standing and sitting) it's just not as extreme as it used to be, and I'm not as symptomatic in the afternoon which I'm grateful for. But, I was wondering if I higher dose of the beta blocker might help with the morning symptoms. To which my cardiologist replied that there are just some things about my body that I might not like that I just have to learn to accept. Like he, for example, was balding, and he didn't like that, but he just had to accept it. My body has a fluky response to being upright, and I just have to accept that. I thought, so.... is his balding interfering with his job and his social life? Because if so THEN maybe they'd be similar. But until his hair loss prevents him from being a cardiologist, I don't think it's really the same thing. Lol!

jump

[carinara]

This happened long before I got diagnosed with pots 10 month ago.

When i first got really sick, i went a neurogolyst. I had to lay down in the waiting room because i couldnt stand upright. The nurse did some little tests on me and got really unfriendly with me because she wanted me to stand still and i couldn't. When i saw the doctor to discuss the test results afterwards, he told me that there is nothing wrong with me and that I am most likely under a lot of stress. I told him, that i have no stress and that I know that something is not right. I explained all the symptoms to him and startet to cry because i was getting so mad, my daughter was only 2 years old then and i couldnt do all the things i wanted to do because my body didnt allow me to.

My doctor looked at me and said: Well i dont quiet understand why you cry now! You must have a depression or an anxiety disorder. He gave me some pills and send me home.

This really got to me! up until that day i never ever thought about that kind of subjects and now the reason for all my symptoms and not being able to stand up should be all in my head?

After this bad episode passed and i felt a little better i followed my doctors advise to go to a sauna to strenghten my body circulation and to pick up my sports again. So i startet doing sports and felt really bad during and after it. I even went to the sauna and got really sick. I tried all this for a very long time. The sauna made me feel so bad, i didnt tolerate more than 1 minute at times.

But my doctor kept telling me that in his opinion ist just my anxiety thats trying to stop me from sports and such things.

When i demonstrated him how my body reacts from sitting to standing he just ment that there are no records of how a body should react whilest standing.

It took many more years before i finally got diagnozed.

[Maxine]

Something that helped me was a growing confidence once I was diagnosed. I knew I would get some of the same treatment from doctors after I got diagnosed as I did before I finally got diagnosed with POTS. However, now I'm armed with medical PROOF. There's still a lot of ignorance in the medical profession, and many physicians would rather blame the patient, or tell them their suffering from a psychological problem then admit they don't know what is wrong with them. This should be a red flag that this type of doctor is full of his own ego, and not capable of helping you anyway.

A few weeks ago I went to a gastroenterologist to discuss my GI films, and he said I had excessive diverticuli covering most of my large intestine, and the very large diverticulum in duodeum/small intestine. He asked what POTS was, and then I told him that mine may be seconday to the EDS, and told him he probably doesn't know what EDS is. HE did! Then he said the EDS probably affected my bowels. He actually wanted to learn more, and we talked for about a half hour. He listened intently, and I was amazed. This is an example of a GOOD doctor.

However, I had to fight and scratch my way as I saved every validating medical record I could get my hands on, as doctors needs facts-----------they can't argue with facts. Still, some docs may dispute what your doctor/specialist diagnoses when trying to find a good PCP, or another specialist. Sometimes I feel like it's conspiracy the way some of these docs act. I know this sounds paranoid, and I do realize this isn't true, but it FEELS that way sometimes, as I see many people with the same types of stories. I'm really DO wonder how some of these doctors get their medical degrees------

As my confidence grew, I actually found that doctors are just humans, and they make mistakes. I learned to stand up to them when they are rude, or to let them know when I feel they are wrong---------------then I just press on. It helps to collect all supportive medical records, and always have them available when seeing a new doctor. I usually take whatever records that are pertinent to the appointment. I take the most well documented clinical notes that best summarizes my medical conditions. I try to keep a nice little package handy. I don't put everything in there, just what I think summarizes everything the best. I do keep track of all records---test results, lab works, clinical notes, ect-------but It's not necessary to take all this to every doc you see.

I hope the standards change some day, and a person no longer has to fear they will be treated rudely, or that the doctor is just plain ignorant. One major problem we all still have is ER DOCS--------------------ahhhhhhh!!!!!!

I think you all know what I mean.

Maxine :0)