Angry And Distraught Over New Dr.'s Thoughts--need Advice

[marni4u]

I have recently moved and was being seen by a Dr. who had been treating me for POTS symptoms for about 6months after coming to that conclusion from a tt test. This week I went to my new Dr. with all my medical info regarding tests, procedures, hospital stays, ER visits, etc. etc. After speaking with me and reviewing the material, to make a long story short, he basically informs me that he feels my only problem is vasovagal syncope which he says is a common condition occurring in half the people at least once in their life and probably about 3% of people develop it repeatedly AND, it's not a serious condition. Then has the absolute nerve to tell me that before he treats me for anything he wants me to have a psychological work-up and asks me if I ever heard of Munchausen Syndrome!!! He tells me it appears I keep subjecting myself to repeated invasive testing for numerous things he feels were questionable--This comment came after I asked him why he asked me about Munchausen Syndrome! I was so upset after I left his office I basically spent 2 days curled up in bed in the fetal position crying my eyes out. And now, my family, who wasn't very supportive with my conditions in the past is really giving me the "look" like I have a third eye or something.

Has anyone here ever had Munchausen Syndrome addressed to them by their Dr. or any medical person? I'd really like to know and, if so, how did they handle this medical professional (I use that term loosely). I am feeling so distraught, so angry and, on top of that just plain mortified!!

[EarthMother]

{{{{{gentle hugs}}}}}}}

I've heard stories about people with chronic illness who have had "specialists" suggest Munchausen Syndrome. I'd really like to see someone fake a tilt table test! About a dozen years ago I had an Endo insist that I see a psychiatrist -- I did, and the one that he recommended in fact. After reviewing my history and listening to my situation he insisted I DROP the ENDO and find a new doctor because it was CLEAR to him that I had an organic physical condition that was underlying my problems.

I actually heard an article recently stated that things like mental illness (depression, anxiety, schizophrenia) are hereditary and that Doctors should ASK about the MENTAL HEALTH of our PARENTS when they are asking about traits like Cancer or Heart Disease. My first thought was NO WAY! Its bad enough to be told we are crazy based on our own presentation and history ... but to be told its all in our head because the nut doesn't fall far from the tree? No thanks.

I think having a life limiting illness is a big challenge for even the most centered and stable person. I also find that having a therapist who understands that I have a physical illness which creates some really hard body sensations to manage can be a big help. In my case, my therapist has been a wonderful advocate in validating my situation which is an asset when it comes to "new" doctors as well as well intentioned but misinformed friends and family.

So sorry you had to go through that sweetie. As I tell my kids when they get called a name --- its never about YOU, its always more to do about something inadequate in the other person.

[Brye]

How horrible to be treated like that. No one should be treated like that!! You can't fake a TTT and you've been officially diagnosed. I wish if doctors didn't think they could treat the problem they would just fess up and send you to someone who can help. Very frustrating but you need to keep looking for that right doctor for you who can look at your diagnosis and come up with a treatment plan with you. I've now gone through 2 cardiologist, 2 EP doctors and I'm now on my 3rd EP doctor who's giving it a try. One of them retired but the other 3 just weren't comfortable treating POTS because they hadn't seen it before. They would never admit to that but it was obvious. The 4 doctors together probably had at least 60 years experience in their cardiac fields but just didn't see POTS frequenty enough to know what to do. I was devastated when my one EP doctor retired because he was the only one who has tried to help. KEEP LOOKING AND DON'T GIVE UP. I've been dealing with this for 1.5 year so far and I'm just so hopeful I will get my life back at some point!!

Good luck!!

Brye

[pat57]

yes, Ernie was dxed with that wrongly also. I searched the forum I believe there are 5 that were told that.

try "Munchausen ' WITH ADVANCED SEARCH /MOST RELEVANT

[erikainorlando]

why did I think that Munchausem was when you did things to make your child sick???

anyway..I am sorry you went thru that. Many docs still look at me like I have 4 heads. I remember two that suggessted counseling. One to really be helpful but the first doctor I saw when I was just starting to get sick told me "it might be in my head" because there was nothing wrong in my blood tests...she told me to see a therapist...i told her i would love to but i wasn't well enough to sit thru a session....

just keep trying....

Erika

[Broken_Shell]

Hello,

First of all, big HUGS and reassurance that those of us on this forum understand and know how you are struggling and that you are doing your best to be able to function and be a self-advocate in your treatment. Second, I am so appauled - I gasped when I read your post. That doctor obviously had made up his mind before coming into your appointment, and if that is how he feels, he certainely will not give you adequate care. A couple of times I have had health care providers going over my medical history say to me "so you don't have anything serious, right?" I want to say, "well besides being unable to stand up or work or complete my education or care for myself for 24 hours without assistance, or go shopping, or exercise, or shower on my own, or drive,.... no I don't have diabetes or hypertension and I haven't had a heart attack if that's what you mean." They just don't get it! If I were you, I would search for a new doctor, but I would also probably send a polite letter to this doctor explaining your situation and your symptoms, and saying that you were offended by his comment and are choosing to discontinue treatment with him because you do not feel that he has the exertise and background to care for you. That being said, if you are well enough to make it to another appointment (that's the irony of this all too), would you be able to see a psychologist just for a consult?... the reason I ask is because psychologists know about mental health issues, and therefore they know when they DO NOT exist. The psychologist would see that you are suffering from a medical condition that needs to be treated by a specialty MD, and this might help avoid future "confusion" (big quotes) over a diagnosis of dysautonomia. Sometimes it is outrageous, but we almost have to prove that we are suffering from a real and disabling medical condition when we barely feel well enough to make it through a day!

Support and Hugs, Broken_Shell

[marni4u]

Thank you all for your words of encouragement and support. It certainly helps when you get little from family and friends (and Dr.'s). I just feel so down right now.

And, Broken Shell, you had a good idea. I was thinking along those lines also. Of course, "the family" thinks it's all in my head anyway so they think I should see a "shrink" for that reason. Right now I'm still so upset and hurt, that it makes it hard to think straight.

I will have to do that search that someone mentioned--I think it was Pat--and see how those other members handled the Munchausen Syndrome accusation.

Anyway, it's nice to know that there are kinder and gentler people out there.

[MightyMouse]

My only suggestion is to ditch the new doctor. And yes, it was Ernie who had gotten that diagnosis. Sadly, her autonomic problems run in the family and are quite severe... but for a long time, the doctors insisted she was making it all up.

Nina

[MightyMouse]

I just did the search... if you look for posts on Munchausen's by the following people were told the same thing about either themselves or their child. you will see you are not alone:

Ernie

Katsusu

StaceyYount

MSUmom

Morgan617

[marni4u]

Thank you again so much. I will go thru the list you posted. It's so nice to know I'm not alone and, that the members of this forum take the time to help other members decipher things even tho so many of you are so very very ill with a host of problems. To take the time out of your day to do this is so heartwarming to me.

[flop]

Hi,

I am so sorry that you were treated like that. Munchausen's is a psychiatric illness where the patient knows that they are not ill but fake symptoms in order to get medical attention, often they get a buzz out of having tests and surgery done on them and will actually harm themselves to get medical attention (eg take loads of laxatives then complain of diarrhoea to get colonoscopies done). It is a very sad condition to have and people with it need expert psychiatric help and compassion. There is a version called Munchausen by proxy where an adult deliberately pretents that their child is ill or harms the child to make them ill so that they get medical attention. They might keep calling 911 saying the child had a seizure or may give the child something to make them vomit etc.

Unfortunately the classic warning signs are young females who have large medical files - that fits with a lot of us!

When I was in hospital the other year for ENT surgery I had some strange neuro symptoms after the anaesthetic (POTS flare due to being dehydrated from fasting and too many meds that affect serotonin levels). The surgeons got a neurologist from the regional centre to come and see me. He basically told me that there was no such condition as POTS and that I was faking all my symptoms. He wrote in my file Munchausen's syndrome then crossed through the actual name and wrote "advise transfer to an inpatient psychiatric hospital for assessment".

Luckily my cardio and my autonomic neurologist had both already diagnosed me with POTS and NCS so they ignored this neuro's comment and I didn't get referred to psychiatry.

What doctors should realise is that living with a chronic illness like POTS is very tough and many of us need psychological support to help us deal with the consequences of our genuine physical illnesses.

Find another doctor - this one has already caused you a lot of stress and upset. I would write and explain though because otherwise he will think "ah-ha, I guessed right so she is going looking for a gullible doctor".

Hugs.

Flop

[Maxine]

Get rid of the Doc--------------he sounds like a very obtuse man that would jangle anyone's nerves.

I'm so sorry you were subjected to that. You most certainly don't have Munchausen's. In fact I think that doctor is in serious need of a psychiatrist, as he also sounds delusional. How did he get his MD?

Don't let this very ignorant man get you down, and search for a good compassionate doctor who actually went into medicine for the passion of HELPING his patients.

Take Care,

Maxine :0)

[ramakentesh]

Fire your doctor. Then forget about it. Ill informed opinions arent worth worrying about.

[ladyt]

hi..

So sorry that u had to meet such an irgnorant doc... And it seems like lots of us here have meet docs like that...

If any doc has diagnosed me whit munch i dont know, but far to many have told me that it all in my head, I am ust to sensitive, etc etc..

i hoped when i got my diagnose that i would meet some more understanding, and some i did.. But also much the same.. one doc ones told me that he didnt understand why i was not working, my condition was not a problem unless i was climbing a leather ( ledder? u know the one whit many steps u put to gett up on the roof etc..=)).

And as befor writen in a post, munch is a very very serios mental illness that docs should take very serious if the really suspect that in a person..

Lets hope there are getting more curios, understanding and serious docs out there...

[janiedelite]

I'm so sorry you were treated like you are lying about your problems. Like EM said, it would be near impossible to fake failing a TTT! When I was in my desperate search for answers, I started seeing a certified therapist to help me deal with my fear and pain. I felt like I was burdening my husband with my scary symptoms all day long, which was making him feel even more helpless. I knew I had an hour every week to unload my fears and frustrations with someone who was very supportive and did her best to help me cope. I was seeing many doctors at the time, and one suggested that my problems were mainly in my head and told me to get counseling. I told him I'd been going to therapy for my illness for months already... and he didn't have any more suggestions. He didn't have the medical knowledge to help me at all, so his knee-jerk reaction was to blame it on a mental issue. So sad because I was hoping that my problems might be in my head because maybe then they could be fixed!

Keep searching... there are doctors out there who are supportive and most of us have gone to dozens of appointments before getting proper treatment! As a side, I agree that counselling can be helpful by giving you emotional and mental support while you deal with your physical problems.

[MightyMouse]

Doctors are just human beings who went to school longer than the the bulk of us (apparently, though, not longer than ME b/c I am STILL in my graduate program... since 2000. Oy vey, but anyway...)

As human beings, they have the same failings as the rest of us. They are taught some ways to counter their egos in medical school, but as humans, not all are equally good at performing.

That being said, if your doctor is not big enough to say "I don't know the answer but I'll do my best to help you find one", then they shouldn't be employed by you. You are their boss, and as such can give feedback and expect a carefully thought out answer. Again, not all humans are equally good at this skill...therefore, not all doctor's will be either... FIND ONE THAT WILL WORK FOR YOU, NOT AGAINST YOU. That's not medical advice, just a suggestion that you're going to have to learn to be your own best advocate--it can be infuriating, frustrating, depressing, but in the end can be incredibly fulfilling and gratifying when you put together a team that works for you. It has taken me years to find the right professionals, but once I have them, I hang on to them.

Also, sometimes, the roadblock isn't actually the doctor, but their staff--I've had to leave several practices b/c I could not get my messages to my physicians, or my messages were intercepted by a nurse practioner who thought they knew better what I needed and changed my meds--in one case, to something I was allergic to. My one neuro actually left his group practice and started a new group with one of his partners b/c of his frustrations with the office staff, and as he wasn't the practice's head doc, he just decided it was better for him to move along than to subject his patients to that team of people. Before he left there, he'd given me his personal cell number and personal pager number b/c the staff nurse hadn't been giving my messages to him, including fact that I was in the ER in his hospital with a severe migraine, and the ER staff wanted to talk to him, then that the migraine hadn't gone away after weeks of treatment, she wouldn't give me an urgent appt, rather she scheduled me for 6 weeks away while I was in acute pain. Nice, eh? Not. When I finally got in to see him for that appointment and recounted my experience, he was infuriated, excused himself, and I know for a fact that he gave the nurse who dealt with me a dressing down big time.

[Dawg Tired]

Fire your doctor. Then forget about it. Ill informed opinions aren't worth worrying about.

I heartily agree!

[anna]

Another thing to remember is that Munchausen's is a rare psychiatric disorder!

Oh yes you can add me on to your list of 'attention seeking disorder' members! My children's paed. thinks that I must have something wrong with me, as all my children have such similar symptoms to each other!!!??

Re: families not understanding, maybe you could print off some of these posts, the ones that show how real we all are and how much stuff we are dealing with on a daily basis!

[MightyMouse]

Oh, one short postscript from me here: I have equal disdain for any doctor that wont disagree with me or at wont least give their medical opinion if it differs for from mine--it just needs to be done respectfully. For example, if I said I was going to try a high dose of a particular vitamin and my doc happens to think it might be harmful to me in some way, I'd want to hear that from them. I might still choose to do something my doctor disagrees with, but at least we're having an open discussion about it--hiding what I'm doing from my doc helps me very little and may complicate things if I get medically into trouble.

[flop]

Nina,

I agree with you - you need to have respect for each other and share information. When I was thinking about getting my wheelchair my cardio went mad with me. He truly believes that using a wheelchair will incapacitate me as I will lose the ability to stand up. I told him what I was considering and why (to enable me to stay at work - I managed 18 months longer in full time employment with the help of the wheelchair). He was rather shocked when I said "thank you for your advice and opinion, I am going to make an informed descision not to follow your advice. I am not looking for you to agree with me, we shall have to agree to disagree on this issue". He was taken aback but I went ahead and got the chair and I didn't get any worse. He still disagrees with the chair and has "banned" me from using it but at least we were able to talk about it.

flop

[marni4u]

You all have given me a lot to think about and, soooooooo much support and encouragement. I've had the mother of all migraines this past weekend--it's getting a little better but it's still not done with me. I think it came on from all the stress this past week. My fam and husband are insisting/pressuring me to see the "shrink" the ignorant Dr. suggested. I was leaning along the lines of finding an independent one but, not knowing whether I would need a referral, I have relented and gone ahead and made an appt. with the one the ignorant Dr. suggested. My head hurt too much to argue anymore. In the meantime, I plan on searching for a new Dr. I'm sure I'll get an earfull from family but, they just don't understand. Sometimes I feel they just think I'm lazy.

[Maxine]

I agree that doctors are only "humans". However, too many doctors are ABUSIVE. A doctor's opinion is one thing, and abuse is another. Abuse comes in many forms, and one of the most prevalent in the medical community is neglect. Unfortunately I have witnessed a lot of this both personally, and have also seen many others on different discussion forums suffer from such neglect that they die from what could have been an easily detected problem. There's an aire of arrogance that makes me sick.

The good doctors need to be appreciated, as they have to make up for the doctors who don't respect and neglect their patients.

[It'sMyLife]

I have to say if that were to happen to me before getting my POTS diagnosis I have no idea what I'd do. I'm sure I would cry for days. But, if a new doc did that to me now... look out. For starters, I would write a letter to the medical board. You have a diagnosis that has been confirmed by previous docs and there are well-renowned doctors who specialize in treating this disorder. They are obviously more successful in their careers than he is. So, for him to blow off your Dx (let alone insult you and ask you about Munch.) after reading notes and not even performing any of his own testing, designed specifically to Dx ANS disorders, is mental abuse to a patient. And, I'm not as familiar with medical laws as I am with dental laws, but it seems like it could border on malpractice. It was negligent on his part for sure! I am saying all this like we ever have the energy to sit and write a formal letter to the medical board. But, if you ever have it in you or have a good friend who would be good at that then I think it would be worth it. He won't lose his license but it will start a paper trail (or add to one that might even be there already!)

I filed a complaint with one of the nurse practitioners here on the base (Air Force) at the women's clinic. It was actually followed up on and I was told by the administrator in charge of patient relations that at this point there's not much she can do since she's never had a complaint like it before. I told her (even though it wasn't really helpful) that one of my good friends had a poor experience similar to mine with the same NP and she said she really wished she'd have filed a report too at the time it happended. Then, she might be able to to more. And, I later met one other friend who had a poor experience and felt insulted by the same **** NP. So, the moral is that we should all report these providers to the best of our ability. Because if we just put it behind us (as is natural to want to do with a painful experience) then it will just keep happening to others.

I wish you the best of luck and I just wanted to reach out and hug you after reading your post. Hang in there! You're not crazy!

[Maxine]

I had to delete most of my previous post, as it was so full of anger I didn't want to upset some of you.

Back when I was first diagnosed there were doctors who were so ignorant and ready to diagnose a psychological problem.

Some doctors tried to help but were lost. I have to respect them because they tried, and they didn't disrespect me.

Later, after I was diagnosed with POTS, EDS and the spine issues my confidence grew, as I had a good team of competent doctors who were well respected. They all have very good credentials, and having validation from NIH about all my conditions was great. When I went to SSDI hearing, and the occupational doctor who was appointed to my case was from Cook County Hospital in Chicago I was surprised how much he knew. He did his homework on EDS, and said my prognosis is progessive and poor. It was good in the sense that I approved for disability, but stunning at the same time that I was THAT sick. I wanted to jump up and say I'm sick, but not that sick----I didn't want to believe it, and sometimes I'm still in denial.

I was stalked on this forum from a nurse who works for a doctor I see for my illness and she verbally attacked about weather or not SHE thought I was qualified for SSDI. She more or less accused me of being a malingerer. Here I was trying to prove how disabled I am, and at the same time not wanting to believe how sick I am, then I'm dealing with a nut case like this. What toilet do they come from?

I no longer have trouble, if a doctor is rude or abusive I don't tolerate it and if it ever gets bad enough I'll report them, just like I did with the nurse. However, I have never been treated like that by a doctor------I think they know better to be THAT obvious about it. A couple of them have come close, but they were't dumb enough to hunt down my personal postings on a "support" website to see what I'm up to-----like it's some kind of sting operation---------we're going to catch this person who's trying to pull a fast one with SSDI------------------LOL.

Maxine :0)

[morgan617]

It was suggested to my primary at one point, but he blew it off and threw their notes in the trash. It is mortifying, but for me, it was the idea that someone would think I would put my family through all this for attention. Maybe if it worked, but since I am alone 99% of the time, that's a bit silly.

I was quite upset too, but then considered the source, realized I still had the support of my primary, so got rid of that guy and just moved on. I got some hospital records and saw they had done a tox screen without my permission, but all they got was nothing, so sometimes their efforts do back fire. I would think there are very few people on here that haven't been confronted with some type of psych diagnosis.

I always found it interesting that most doctors will question everything but a psych diagnosis. When you look at the stats, conversion disorder and Munchausen's are among the most rare illnesses on earth. But they poo poo the more common, but still somewhat rare physical stuff.

Doctors are human, after 30 years of working with them, trust me I do know that, but one who is completely unwilling to deal with their insecurities (ie: unable to just say "I don't know) has more problems than we do. Say good bye and move on.....morgan