How often you think people are misdiagnosed?

How many times have you heard of someone being misdiagnosed as bipolar? I know MI’s are hard to distinguish between, but for five years, my doctors told me I was bipolar and gave me many, many drugs for it….drugs I did not need. After a while, I had a new dr ask me some questions about drinking and some of my hypomanic episodes blahblah and he realized that everything that happened that seemed manic was caused by drinking.

I do have severe anxiety with depression, so the down stages were there, and when they weren’t, I was either in the middle or drinking, making myself v.up. Because of all of this, I even took lamictal during my entire pregnancy because they believed it to be more dangerous than not taking it. My child is almost six and fine, but it still makes me angry. The first doctor just decided what I was quickly during a hospital stay and every other dr for five years just went along with it (because it honestly all made sense to me….I didn’t think about alcohol or drugs having any part of it).

So now that this question is a novel, I just wonder how often you think people are misdiagnosed because of drs not checking the facts or just believing patients or previous doctors or whatever other reasons, and what consequences that has on the person being *treated*?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It’s not often I hear about diagnosis going that way, wow! That must have been very difficult. Though the stigma out there is that everyone is diagnosed with bipolar these days. If that’s true, I’ve yet to meet all of them. Where are they dang it!?!?! Sigh…

Let’s be frank (though I prefer to be George…), bipolar is NOT easy to diagnose. There are so many symptoms that can be other issues. So many symptoms that don’t even get noticed. And so many outside influences causing symptoms that might not otherwise be there.

When you throw in a little self medication it’s so hard to know what is what. Is it a mood disorder? Is it substance abuse? Is it both!? The problem is, regardless of why we are self medicating, the majority of us like to hide that little tid bit, and unfortunately, not all doctors consider asking about it. Is that our fault? Is it their fault? Probably a little bit of both…and I’m sure it happens to SO many people because of this break in communication.

Though my story is a bit different, in so many ways it is much the same. Where on one hand, you were more than willing to accept the “title” of bipolar because it made sense and explained the symptoms, I did the opposite. I had all the symptoms. I knew what was going on. But for the most part, I could hide the ups (or at least from a doctor that is) I what ups they were aware of they just attributed to my ADHD. I went 10 years with just being treated for Depression and ADHD. Stimulants only increased the swings and anti-depressants did nothing to stop them! In the end, I was a mess.

When seeking treatment there are some VERY important things to keep in mind, whether it be for yourself or for someone else you are trying to help. There is a reason we are seeking treatment. There is pain, lots of pain. Pain in those of us experiencing a mental condition and  pain in those watching us suffer. Everyone’s goal is to do what? Stop the damn pain!

So why is it that when we go to the doctors and set out for a diagnosis we only tell them where half the pain is? It’s like going to a doctor after falling out a tree and telling them all about the pain in your broken leg but forgetting to mention that you smashed your wrist too. Just because your wrist doesn’t hurt AS MUCH as the leg does, doesn’t mean there isn’t something wrong with it. When we seek treatment, we need to be forth coming about everything!!!

At our first doctor’s appointment, we should be equipped with a list of ALL our symptoms no matter how much we don’t want to talk about them and no matter how much we think they MIGHT not be a symptom. I mean maybe it’s not a symptom, but we aren’t the ones to decide that. When making a list, ask yourself a bunch of questions …

  • Am I sad? How often?
  • Is it so bad that I’ve considered ending my life, hurting myself or hurting others?
  • Is that sadness caused by some sort of event? Or is it there for no reason at all?
  • Am I anxious? How often?
  • Is that anxiety set off by certain types of stress, all stress, or just nothing at all?
  • Am I happy in a way that seems almost unnatural? As in completely euphoric to the point of doing crazy things?
  • How often does this happen? Just out of the blue? When I’m self medicating? When something really good happens? How long does it last?
  • Are there other symptoms I’m experiencing that just seem out of the ordinary to me? Do I get really irritable or angry when there doesn’t seem to be a reason why? Do I hear voices or see things that no one else does? Am I unable to concentrate? Do I have racing thoughts?
  • Is there ANYTHING else that might help my  doctor in this diagnosis? Family history? Childhood events? Past substance abuse? Past anything that may have had an effect on who I am now?

Yes I know that the doctors SHOULD ask all of these questions. And yes I know that we fill out novel length questionnaires that ask most of these questions. But things do get missed. Sometimes the questions aren’t on paper. Sometimes the doctors are focusing on one symptom and may not think to ask about another.

Before I was diagnosed the doctor I was seeing was so focused on helping me get rid of my depression that he didn’t even think to ask any of the other questions. Bipolar was the last thing on his mind. When I went back to him after I got out of the hospital he actually apologized to me for not seeing it. He said it explained everything all the way down to why no matter how high we increased the doses of my anti-depressants, nothing seemed to help.

So after combating your novel with one of my own 🙂 … to answer your question … I’m sure it happens often. Doctors want to trust us that we are telling them everything. And if we don’t tell them everything, they have nothing more to go on. We like to think that they’ll ask all the important questions because maybe we don’t know they are important. Sure, a handful of the absolutely awesome doctors will dig deeper and get to the root of things, but that’s hard to come by. (NOT IN ANY WAY DOWN TALKING PDOCS. THEY ARE AMAZING and I can totally understand how hard it must be to come up with a diagnosis. Especially when us patients – me included- withhold some of the facts.) So although it happens often, it’s hard to say if it’s actually the Pdocs fault or the Patients. And in your case, I could tell you which either.

I think the point is, trying to place the blame on a misdiagnosis won’t get us to where we need to be. Once we have the correct diagnosis we should embrace it and be happy that we were able to find a doctor who caught it. And if at any time you question a diagnosis, NEVER hesitate to get a second opinion, even if just to quench your need for reassurance.

Just remember, honesty and communication go very far in trying to find the correct diagnosis!

***Please keep in mind that these are just my opinions and are not in any way intended to offend anyone. ***

7 thoughts on “How often you think people are misdiagnosed?

  1. Well said, Marybeth. I was misdiagnosed with plain old anxiety/depression for about 15 years and then actually diagnosed myself correctly during a series of sessions with a psychologist. She’d given me a book to read on cognitive behavorial therapy, and there was a small section in the book with differential diagnoses, including cyclothymia. It just fit me to a T. I took it to my parents and asked them to read it. They agreed that it sounded just like me. And my dad even said, “Wow. We used to joke when you were in high school that you seemed a little bipolar. We didn’t know there was such a thing as a little bipolar.” When I brought it up with the psychologist and showed her what I’d read, she had a sort of ah-ha moment right in front of me and said she thought I was right but would have to refer me to a psychiatrist. The psychiatrist said my history, particularly m agitation/mania in response to antidepressants, was a pretty good indicator. So, that’s my story of “misdiagnosis” in the other direction. Though I’m taking a mood stabilizer and a verrrry low dose of antidepressant now, and I’m feeling somewhat better, I think I’ll always wonder if I really have the correct diagnosis. Without something equivalent to a blood test, the closest “test” I’ll ever have is the way I responded to antidepressants. But the real reason I’m compelled to comment right now is that I recently had an ah-ha moment of my own with regards to alcohol. I was having two glasses of wine — sometimes three — almost nightly, to wind down after spending the day getting wound up by my little kiddos. The wine truly did help me fall asleep, but everyone knows that alcohol actually screws up your sleep during the night. Waking at 3:00 a.m. and having trouble returning to sleep was commonplace, except that I would also take a Benadryl sometimes to help my sleep duration. It occurred to me not long ago — and I feel ridiculous that it hadn’t occurred to me before — that if I’m THAT wound up at night, I should take the damn Xanax the doctor prescribed to me two years ago when I was having panic attacks. I never take it aside from severe panic episodes because it makes me so tired! Well, what’s wrong with being tired after the kids go to bed, particularly when I know I have trouble sleeping without the aid of wine or Benadryl!? And wouldn’t it be better to get better quality sleep and not spend the first hour of the morning feeling like a snail? So, I replaced the wine with a 1/2 Xanax every night for the first week. Then I replaxed the Xanax with a Benadryl after that. If I want a glass or two of wine, fine, but not right before bed and not for the sake of making myself calm or sleepy. This whole experience made me realize how really absurd it is to continue “self-medicating” with alcohol after a depression or bipolar diagnosis that is being treated with psychotropic meds. Let the meds do their work, and be careful about the alcohol. Of course, my psychiatrist had warned me to be careful with alcohol, but I didn’t listen. I like my wine! Now that I’ve taken daily wine out of the equation, I can truly feel my medication working and my mood lifting and stabilizing.

    The upshot of this all is that I think we all deep down do know that alcohol is probably not real great for mood disorders. And I think doctors sometimes rightly assume that we all know that alcohol affects mood, so we wouldn’t be complaining of mood issues without also mentioning that we are drinking a bit much. Like you said Marybeth, it’s a little like falling out of a tree and complaining to the doctor about only some of your pain while keeping other symptoms secret.

    Anyway, good job.

  2. I am SO with you on that one. The doc I was seeing b4 my diagnosis had said the same thing about Xanex. He said he’d rather having me take one Xanex a day than drink alcohol. So I find it funny that you say that.

    And thank. I was pretty nervous about this post.

  3. I am 47 yrs old and I still believe they have not given me a correct diagnosis. The problem I have is that I move around quite a bit so I get interrrupted care. A new doctor here for a yr, no doctor for a yr, another new doctor here for 2 yrs and so on. My care is not consistant. I often wonder if my psychiatrists connect with one another on my case.
    And with each new doctor comes a new diagnosis. Right now, I have a family doctor that is 300 km away (can’t find one here so stayed with the one I had before I moved) so I see her once a yr if that. I also have a psychiatrist that I’ve been seeing for about a year. I feel we’ve never clicked and we certainly haven’t gotten into anything on a deep level. In my opinion he’s just a pharmacist. He gives me meds. I am financially struggling so the good thing is, he is kind enough to get me samples so I don’t have the high cost of medication. But I feel it’s the wrong medication.
    Foolishly last June (unbeknonced to my psychiatrist) I stopped taking ALL of my meds (700mg of Seroquel XR, 300mg wellbutrin as well as 1mg Lorazapam) I plummetted into a deep depression which I am still in and can’t seem to get out of. I have since started to slowly introduce them back. So presently am taking 150mg of Seroqel XR a day. (I break the 300’s in half) I don’t see an improvement. I missed my last app’t with him (which he was obviously mad at and sent a curt letter to my home) but I have a new app’t for first wk of November. I’m hoping I have the courage to tell him I’m not happy with my diagnosis or chose of meds and would like to be completely re-assessed. But just like in your articles, I never disclose everything. (Am I the only one who feels like I’m taking up too much of my doctors time so just ‘skim’ over my problems to make the app’t short?)
    So, maybe reading all of this, I will take the bull by the horns and go in guns blazing. Something has to change for me becasue right now I am not functioning and life is a struggle just to get out of bed and getting into the shower feels like I’ve accomplished mount everest.
    Let this be a lesson (eye opener) to us all. We get the care from the doctors what we put into what we disclose and offer.
    Indigo Rose
    Blog: Living In My Black Fog

  4. Excellent Post MB. AHHHH…..you were very diplomatic as well,I had lots of thoughts rolling around in head! =]

  5. Thanks so much for your well thought out answer to this.
    It is true that wondering about it now isn’t going to change anything. And knowing the *real* problem (depression and severe anxiety chemically attributed to lupus) makes a world of difference.
    I’m just one to want answers and if they seem to make sense, I jump all over it! Even if they’re wrong.

    And about Xanax… I can’t take it anymore b/c I became addicted quite quickly. Actually, the whole reason all of this started is I was having horrible panic attacks after 9/11 and finally went to my dr (pcp) and told him how I’d felt most of my life — since adolescence. He put me on Paxil and Xanax and it sent me into a weird, almost hypomanic state where I was hospitalized (and misdiagnosed).
    But I’ve been on Klonopin now for over 7 yrs and haven’t had to increase it — I just use it twice a day for regular anxiety plus it helps me sleep.
    And yeah, it’s way better than a glass of wine. That works and all, but I’d rather take something that’s specifically for the symptom — not self-medicating. That’s what got me into trouble in the first place!!

    Again, thank you for taking the time to answer this so clearly and thoughtfully, and I really enjoyed the comments, as well.
    It’s always nice to know you’re not alone, which is why I love this site…
    So thank you for that, as well..

    :))

  6. This is something that’s really annoying me at the moment. I was told I had cyclothymia a few years ago and having previously been on loads of different pills that all made me feel ill and not sleeping properly for 18 months, I couldn’t be bothered to argue anymore. I just took the pills (which make me feel completely out of it) and I still take them, even though they mess with my work. My diagnosis happened after my mother dragged me to the doctors and made it sound like I was bipolar. She had always been sure of it even though she’s the only one that “sees it” and nobody else I know – including the bf I live with – has ever noticed any of these “symptoms” she has (she later changed her mind and said I might have a personality disorder or schizophrenia and then changed her mind again recently and said actually, maybe there’s nothing wrong with me!.

    She could remember all the “episodes” where I talked faster than normal (seriously this is the kind of stuff she is relying on) and although I was in the room with her and the doc explaining that the times she was referring to were times I was under extreme stress and I DID NOT feel happy, I ended up on mood stabilisers anyway (if I feel really stressed and I’m talking faster and full of energy, that’s a mixed episode apparently – not just, you know, anxiety…).

    I started to think I was wrong – maybe I just didn’t notice the mood swings – so I asked everybody I knew. None of them said they could think of a time when they thought I was behaving substantially differently to normal or when I seemed euphoric or high. I can see how my more frantic times could be seen as hypomania, but I didn’t feel any of this happiness that other people talk about, I felt needy and desperate and anxious and these were times when something was happening to me on the outside (like during a break up).

    Anyway, I recently got transferred to a psychiatrist and hoped she’d take the label away but I quickly realised I was just being screened for schizophrenia after teling my GP I felt foggy and slowed down and had episodes of feeling like I had dementia. I was asked two questions: 1) do you hear voices? and 2) do you think people are out to get you? Then I was told to cut down my lamotrigine, which is probably causing the problems. I asked to go off it entirely but I was told I might relapse. I don’t know why I didn’t say right then “in what way would I relapse? You haven’t asked me about my symptoms?! You haven’t checked to see if I’m actually bipolar?” I should have said something but I was frozen with anger. I’m so sick of being passed from doc to doc and none of them really speaking to me, just asking me a couple of questions from a sheet and looking agitated if I try to go off route and tell them something else – I guess they’re short of time.

    Sorry for the rant, I really, really needed to get this off my chest!

Thoughts? Questions? Leave your feedback here!