Schizophrenia.com

Disputing a Schizoaffective diagnosis

Although this may seem hypocritical, I joined this forum to get help for a friend who has been diagnosed with schizophrenia who does not accept his diagnosis, and here I am not accepting a schizoaffective diagnosis that apparently I have been given. I am not aware at which point this diagnosis was added to my chart as I was never given the diginity of being informed that someone had given me this diagnosis, I only saw it written on a referral that my doctor had written for an unrelated matter. I am sure that no doubt I have a lot of the symptoms of schizophrenia/schizoaffective disorder but I believe that they are better explained by other diagnoses I have, including a recent diagnosis of Asperger’s syndrome. I have BPD, Asperger’s, social anxiety, OCD, reccuring major depressive episodes, severe IBS/digestive problems/malnutrtion, ADHD-pi.

I think I may have recieved the schizoaffective diagnosis the last time I was in the psych ward for suicidal ideation triggered by my worsening digestive health and overall physical health. I have a general distrust of the medical profession due to 10.5 years of repeated negative interactions with them, spanning close to 200 doctors. The distrust I have is limited to the medical profession and does not carry over to the rest of the people in my life, so from the doctors perspective, this could be interpretted as a symptom of schizophrenia as a paranoid distrust of everyone rather than a consequence of my own experiences specifically limited to them. I believed I had parasitic infections causing my severe digestive problems, and even had photographs of what I believed to be worms in my stool. I am sure that this could have been easily mistaken as a psychotic delusion rather than a reasonable belief I had/have. I was very angry at the time that I was stuck in the psych ward and that no doctor was even acknowledging my deteriotating physical health, this paired with my (at this point in time) undiagnosed Asperger’s syndrome(since formally diagnosed) that made my speech appear to be “disorganized” and not neurotypical. I have had ongoing struggles with brain fog, and worsening cognition as well, which at times I guess can cause my thoughts to be all jumbled or scatterbrained but I have found that this has worsened as my digestive and physical health have declined, and I could see how this could be mistaken for symptoms of schizophrenia. To add to this, much of the last 10.5 years I have been on antipsychotics already for reasons such as anxiety, problems with sleep, mood stabilization.

I really feel this diagnosis is incorrect and I understand that a lack of insight is a symptom of the schizoaffective/schizophrenia but this contradicts what I am often told repeatedly by therapists and doctors when they comment on the extraordinary insight I have into my own health on nearly every other issue. I am by all means open minded, but I just havent been provided any evidence that this diagnosis is even correct, when I have plenty of other diagnoses that better explain my symptoms. I don’t even know who I can dispute this with as I don’t even know when it was added and by whom. I know that it gets trasnfered from one doctor to another and it is going to follow me wherever I go, and that I will just be written off as someone who is unable to come to terms with their diagnosis rather than even considering that this diagnosis is incorrect. I don’t even know who to have this conversation with. I dont’ have a current psychiatrist but I have a referall for one, but the wait list is extraordinarily long here. I doubt a family doctor is going to even entertain questioning a diagnosis like that themselves. The diagnosis bothers me because stigma in the healthcare profession exists, particurly when one has mental illnesses AND physical illnesses. The physical illnesses tend to get written off as just mental illnesses, and as a result the patient gets inferior care. That is exactly what has happened in my case, time and time again, specifically relating to treatment regarding my severe digestive problems. To give an example, I’ve had one doctor in the ER try to claim that diarhhea every single day, for 12 months, not being able to digest a solid piece of food was caused by “OCD”, and as a result was offered a referral to an anxiety clinic instead of a GI specialist, that is the kind of stigma and discrimination that bothers me the most.

3 Likes

I can relate to the obsessive analysis in and of itself. It can drive you mad, though.

So the argument is that MI diagnoses may get you inferior care for physical illness because of stigma? Wouldn’t that hold for all the MI diagnoses you presented? Why is it specifically this one that you want to get rid of?

My personal take on it is the following. I choose to trust professionals because not doing so would resemble the paranoid episodes I had too much - this may be different for you, you say distrust had never affected any other areas than the medical profession. You see, when I am not doing well, in psychotic episodes, I tend to confuse rules and exceptions. So I would take a possible exception as a rule. So I’d say that while it is true that doctors may make mistakes in diagnoses, and while it is also true that there may be stigma around in the profession, these should be taken as exceptions and not as rules. If you feel you aren’t getting the treatment you should, you can get a second opinion. But if you find that your distrust affects any second opinion as well… than it makes me think a lot of my own confusion of the rule with the exception. A distrust of the medical profession as a whole is such a confusion, I believe. For it is clear that, as a rule, it functions and helps people and knows what its doing. True, there may be exceptions to this rule, people may make mistakes. That’s why you can speak up and ask for a second opinion. So you could ask for the new psychiatrist to re-assess your diagnosis. But my take on it is that, if he decides upon a SZA diagnosis as well, you might as well take his word for it. You come across as indeed having quite some knowledge and experience with mental health problems. But these doctors are the experts… at some point, if distrust towards expertise in any field persists… that in itself makes me think of my SZ thoughts. For where would such a distrust end? What if everyone keeps diagnosing you as such? Would you still distrust it because you feel different about it yourself? In general, but especially with SZ/SZA diagnosis as a possiblity, I think personal (dis)agreement with the diagnosis should not be criterium for its accuracy.

Moved to Unusual Beliefs.

Pixel.
(Wearing moderator hat)

My argument is that my symptoms are better explained by my other diagnoses, including the Asperger’s diagnosis that I received only last October as well as that a schizoaffective diagnosis will only be further used to stigmatize and discriminate against me which will lead to even more inferior care than I have already been receiving. Absolutely my other mental illnesses are seen by doctors as a license to ignore. BPD is used to ignore any suicidal feelings I have. Anxiety is used as a scapegoat by doctors for physical illnesses so that they can be lazy and avoid actually putting in work to find the cause of any physical health problems I am suffering from.

Schizoaffective would be used to dismiss and ignore my claims and recounts of my own symptoms as being “just in my head”. For example when I stated to doctors that food would pass through me undigested like lettuce, or nuts, or other easily recognizable foods that I could see in my stool, my account of what I saw was called into question. I wasn’t aware I needed to prove that or meticulously catalog all my diarrhea and provide time stamped video evidence of the hours on end I have to spend on the toilet each and every day crapping my brains out. Certainly my words would be enough if I did not have any mental illness or this diagnosis. That is an explicit example of discrimination. Another example was when I brought my mother into the appointment with me to see my family doctor after this psych ward visit, as soon as he sat down, he addressed my mother instead of me, acted as if I was not even there in the room, when in fact my mother was not even present at the psych ward at all. Apparently I was too psycho to address as a human being?

By all means I am open minded to any diagnosis but no one has even explained to me why they believe I have schizoaffective, hell they didn’t even tell me I had it(another reason to reinforce my distrust among 1000’s), I had to find out on my own by sheer luck that I saw it written on a referral. Imagine if a patient got diagnosed with diabetes and was not informed of their diagnosis, would that ever happen or be okay? Of course not. Neither is this. Discrimination in the healthcare system is the reality. I mean even when I went to go have a colonoscopy done, before I was put under anesthetic, I was asked out of the blue by the doctor performing the procedure if I “had ever been institutionalized before”? How could that possibly be relevant? Although this is an explicit example there are countless more implicit examples that I have encountered in the last 10 and a half years that are far worse than this.

I don’t think I am being unreasonable to simply expect to A) be shown the dignity of being informed of a diagnosis that is given to me and B) having that diagnosis explained to me, and why they believe I have that diagnosis in an open discussion where both sides are heard. If I do get another opinion from a psychiatrist and they agree that I do not have SZA, then I want that to be put on my file, not just have the agreement be limited between the psychiatrist and myself. I don’t want this diagnosis to be passed onto EVERY other doctor I end up seeing for reasons I have mentioned above. I even discussed with my family doctor and he said “its no big deal” for him, but refused to amend my patient file. When I gave him disability forms to fill out, he made no mention of the schizoaffective diagnosis. While it may be no big deal to him, it is a big deal to me, because I do not want to have to constantly reexplain myself to every new physician or specialist I see, that is why it bothers me.

You sound paranoid about your health. I hope it helps you to know that many doctors prescribe the same medicines that schizophrenics take for autism as well. So what’s the harm in trying to use the medication?

I am already on 100mg Seroquel for sleep and mood stabilization, and I don’t need any medications for my Asperger’s. I don’t understand what you mean by “paranoid about your health”? If its meant to be dismissive of physical health issues then this is exactly what I was complaining about. I haven’t been able to digest a solid piece of food since June of last year. I’ve had diarrhea every single day for 2 years. I have a bone disease which I’ve had 4 surgeries for so far, and require two more, it isn’t imaginary. It really pisses me off when physical health issues are dismissed as “all in your head”. If you have a mental illness AND a physical illness, you might as well just forget it, forget seeking any treatment because this is the kind of ■■■■ you have to put up with.

Have them put you on clozapine instead of seroquel, that’ll make you constipated :wink:

I am half kidding half serious.

I’m so sorry for your troubles with the medical industry, I certainly can relate. Just a week ago I had my 6 month visit with the psychiatrist and on my most recent paperwork I had a couple more diagnosis’ than I knew. I agree, what we go through as result of medical professionals suspected Lack of true moral concern can harm ones internal stability even more. We need a moral boost in the concern without predetermination department, on the doctors end. As for you and I, I’ve found it best when I’ve tried 6 years to find real medical help from a genuinely concerned med professional and I’ve met 2 out of 50. Just kiss their ass(s) and you’ll have a big decline in crap doctors, you’ll suddenly see a change, I definitely did.

Be assertive. Listen to what the doctors say, but be willing to dispute it if it is wrong. The physical ailments you have are bound to have an effect on your psychology. It could be that the doctors are just trying to pass you off because they don’t want to be bothered. Don’t lay down and die because they don’t want to be bothered.

Okay just a couple things:

It’s very common for people not to fully digest some plant fibers, including nuts or foliage type greens. Pineapple is another one that will clear you out, and you might not digest all of it.

When it comes to the parasite fear you had, I have seen that a lot with hypochondriacs. I dealt with it, too, the hypochondria, and wound up joining entire forum communities where everybody was fasting, drinking weird concoctions and eating dangerous plants, trying to get the parasites out, and then obsessively inspecting their stools. I think it combines an OCD type fear of being contaminated and invaded, with a heavy splash of hypochondria. I wouldn’t consider it a full-on delusion because there’s a lot of hyperbole online with hugely exaggerated claims and made-up statistics about parasites in first world countries, and that can easily scare people already prone to these issues (it got me!).

These are the sorts of things that can lead to doctors dismissing complaints. That doesn’t make it “okay” but that’s where it’s often coming from. Not because we have mental illness, but rather if we freak out over things that are either normal, or freak out trying to remove parasites that aren’t even there, that makes most doctors focus on the anxiety we would be suffering, and they see that as the source of the suffering, and so that is what they think should be treated.

Some doctors are just lazy and suck in general, and should be avoided by everyone.

Like if you want to dispute the diagnosis and try to get it off your records, cool. I don’t know how to do that, would have to Google it up.

But chances are you have sensed some real skepticism from doctors and I can understand why it would totally piss you off. But there are some things you describe that are anxiety related, and so it’s possible that some doctors were just trying to help you in the right way, with some of those things.

I joined this forum to help people live with their diagnosis and the accompanying condition. Not really interested in helping someone disprove their diagnosis, especially since I personally know how rare it is to get misdiagnosed with that condition.

Pixel.

1 Like

Nothing is normal about my digestive system at this point. I wasn’t functioning just fine and just one day said, oh I might have parasites, I have had gradually declining GI health since 2006 when I first started to complain about my symptoms to doctors. Also, it was a reasonable explaination as I saw them, white, 2-3 inch long what looked like worms to me. I have 6 photographs, 5 of them HD. You cannot take a photograph of a hallucination or a delusion. Whether or not they were worms, doesn’t make me psychotic. I had severe gastrointestinal symptoms that were worsening that doctors were doing jack ■■■■ to solve or treat at the time. I am not a hypochondriac, my various health issues have completely disabled me. I have spent the majority of the last 10.5 years of my life, amounting to 1/3 of my entire life suffering. I have had to drop out of college, been unable to hold a job, have been financially ruined, have lost friends, have had to give up on pretty much everything because of what my poor health has taken from me. I absolutely did not choose to be sick.

If doctors were to come up with their own answers and treatment for my severe GI problems that actually worked and produced results, then by all means I am all ears. While it may not occur to most doctors, I do not want to be sick for the rest of my life, I want my life back! Having a schizoaffective diagnosis just puts one more roadblock inbetween myself and the actual care that I need.

When I was having my formal assessment for autism done (which occured a month after the psychward visit), the psychologist noted that he didn’t see any signs whatsoever of schizoaffective and had no idea how I would have been diagnosed with that. But regardless its on my file. Apparently any question to the contrary only further labels me as psychotic. I have to wait till December likely of this year by the time I get to see a psychiatrist that will actually take me on as a patient, outside of the useless one time 20 minute consults you get from the ER. I already booked an appointment with a new family doctor because I cannot stand the one I currently have. He ignores literally every word I say, even if it is just paperwork and completely unrelated to anything mental or physical health. I will see what I can do to at least stop the transfer of that part of my medical file to my new family doctor.

This thread isn’t only about disputing a diagnosis, but also the discrimination one faces with the diagnosis when it comes to access to care/treatment, particularly when it comes to physical health issues. I would have thought those from a schizophrenia forum of all people would be able to relate to having experienced having been dismissed and having their every thought and action called into question and labeled as “just all in your head” I am also glad you enlightened us all with your personal experience that doctors rarely make mistakes, and consequently the belief that a doctor can and does make mistakes is labeled as an “unusual belief”.

It’s extremely hard to get misdiagnosed, so you’re likely barking up the wrong tree. In the very unlikely event you were misdiagnosed, your post is off-topic for this community.

Pixel.

Look, if you really had diarrhea every single day for 12 months (a whole year) untreated, you would have probably died. Your electrolytes would have been so messed up that your heart likely would have failed after an entire year of diarrhea every single day. Not to mention the severe dehydration.

So that means you showed up claiming to have diarrhea every single day for an entire year, untreated, and with photos of things you thought might be worms, that were not worms.

I mean we can either assume that you have a tendency to severely exaggerate or flat-out lie here, or we can speculate that maybe your perceptions of events were somehow off, and that is why the doctor wanted to know about your mental health, and we can try to gently discuss this possibility with you.

But if you’re gonna act like a sarcastic, sassy dbag about it, then maybe you should seek sympathy elsewhere. Like I said, some doctors suck in general, but most doctors won’t dismiss everything just because of MI, because that would be severe negligence and could get them in trouble.

When you get a new doctor, consider asking them about Coeliac disease, or “Celiac” disease. A simple blood test should be able to help them figure out if it’s the likely cause, or if your mind has played some tricks on you.

Yeah, no kidding. A week of the scoots from my diverticular disease usually lands me in the hospital. In all the years I’ve had SZ and been dealing with other mentally ill, I’ve lost count of the number of people who claim they were misdiagnosed with sz/a. I can, however, tell you how many people I’ve met who have actually been misDXed:

Zero.

So, no, I’m not buying it.

Pixel.