Diagnosis experience, a little concerning.

[1gilzanmato]

I am being treated by a mental health team, they have not diagnosed me with anything, although they do say I have a psychotic illness and major depression. But the psychiatrist also said directly to me “that there’s no consensus on a diagnosis”. The case manager has OFF-HANDEDLY mentioned schizophrenia multiple times, directly to me, but never in front of the psychiatrist when we have meetings together

it has been 3 years with the treating mental health team, and nothing has come of it.

i have no idea how to proceed in this instance, as everyone I have talked to says stay with the team as they offer support that others cannot, but the whole thing has become extremely tedious...

anyway, my question is, how long does a diagnosis typically take, say for schizophrenia/a psychotic illness?

[Ebi]

Hi 1gilzanmato,

Welcome to the BB forum. Speaking from my personal experience of my son's recent diagnosis with schizophrenia... He was given a provisional diagnosis of schizophrenia initially. Then he was sent for an MRI, EEG, blood tests, etc., to rule out other diagnoses. He was also commenced on medication. I think about 5-6 months into the situation, the 'provisional' part was dropped.

Have you asked your team directly what your diagnosis is? Do you think you could ask and/or engage them in a discussion about how you're feeling about the situation?

Thinking of you, Ebi

[1gilzanmato]

I ask them pretty regularly about a diagnosis (they mention lots of different things, varying from, major depression, a psychotic illness, anxiety and a cluster A personality disorders), but they don’t seem to want to answer concisely, and when I ask specifically about schizophrenia they deflect my questions, with the sentiment of “you’re a smart person and have potential” and they don’t even answer it directly (which is what I find concerning), I’ve also had, I’m very sure all the biological tests (mri, blood work, EEG )

I’m on a hefty dose of an antipsychotic which surprisingly helps keep things in check (even though the symptoms were minor, imo) and I’m on a max dose of an antidepressant (my eighth one, and none of them have done anything, even at max dose)

like I said, it’s been three years and only in the past few months I found out they assume a psychotic illness is at play.

the thing that is getting to me is that they aren’t being, to a degree, honest and are deflecting my questions.

and when I talk about the lesser understood symptoms of schizophrenia, that may be the reason for the assumption of depression the team say “the internet can be wrong” even though I have read multiple sources and multiple anecdotes stating similarly to each other.

[Ebi]

That sounds difficult and frustrating, in that you are wanting clarity about what is going on and it sounds like your best attempts to get a clear answer from the team are not being successful.

I don't think they would be wanting to cause you distress.Teasing out the different elements of your symptoms is so challenging... the problem being there is no direct and unequivocal test for these mental illnesses. I know my son is really struggling with the uncertainty of it all plus he is getting weighed down by the effects of the medication.

What sorts of things do you do to lift you up when you get weighed down by this stuff?

[1gilzanmato]

I don’t really do anything to “lift me up”, and to be honest I’m not sure if there is anything that can do that. Until I know what is going on (I know dwelling on a diagnosis is a bad idea, but if it’s something like schizophrenia, I’d rather know and deal with it, than not know what my limits and factors are )

i just take my time with things and sit on my computer, that’s all I can really do at the moment.

[Nurse_Jenn]

Hi 1gilzanmato,

Welcome to the forum. It's great to see you reaching out here for some support. Your situation sounds difficult and I hear your frustration in not having a clear picture in your diagnosis. I have been working in the mental health field for a long time and have seen many people diagnosed in different ways. In one setting, people who experienced psychotic symptoms would never receive a diagnosis of Schizophrenia before at least two years of symptoms and were determined to have a diagnosis of Psychosis, Not Otherwise Specific (NOS). In other settings Schizophrenia was diagnosed very quickly and early on in a persons illness. In my experience, a slower and more cautious approach to diagnosis is a much better pathway and reduces the risk of misdiagnosis.

Psychosis is a symptom of some mental illness'. It can occur in the context of a depression, or a symptom of a mood disorder like Bipolar, it can be a symptom of Schizophrenia or can occur on its own. I have attached a fact sheet from the SANE website which is another great resource for information on mental illness.

https://www.sane.org/information-stories/facts-and-guides/psychosis

My suspicion is that your treating team is taking a cautious and slow approach to giving you any specific diagnosis as they want to see how you respond to treatment and assess your symptoms over time and get a really accurate picture of your symptoms profile. I would continue to persist in getting the answers your looking for with your treating team and if you aren't making any headway, you could always ask your case manager for a second opinion.

Taking care of yourself during this time is important. You are not alone and I encourage you to look around the forum for different self care strategies and support as stress can make all symptoms worse.

Wishing you the best possible outcome,

Nurse Jenn

[Mary_Ploppins]

I hope everything sorts its self out soon. I was wandering how do you manage to get a team. I have a Psychiatrist but feels like we have been dancing around the same thing for the past year.

[Ebi]

Hi Mary Poppins,

Such a good question about how to get a team... My son has somewhat of a team because he was seen in the community mental health setting. So he's seen a psychiatrist and a case manager. Plus a GP. Having said that, the mental health services here were so understaffed that they had a series of locums in and so he was seen by several different people and that wasn't so good... Things went a bit off the rails... More recently I found a good GP who is able to manage his medication and he's got consent to liaise with the case manager and we're leaving a psychiatrist out of it for now... I'm optimistic about this new 'team' but I feel like we've had to put it together ourselves. So, all that to say, one way of getting a team might be to find the health professionals that click with you and try to get them all talking to each other.

[1gilzanmato]

My psychiatrist at the time suggested I get into a mental health team, I’m not really sure why though, the only thing I can think of is that the psychiatrist mentioned “prodrome” (when I googled “prodrome” nothing came up other than prodromal schizophrenia)

[Aunt Jobiska]

Hi - that sounds extremely frustrating! Sometimes the diagnosis is unclear, and your doctor may not want to give you one diagnosis, only to change their mind, and then give you another one - which can definitely confuse patients (the number of patients out there who think they have both major depressive disorder and bipolar (not possible) because the initial diagnosis got changed...).

I'd ask if your psychiatrist has sent a letter to your GP, and ask for a copy of it, as that might have useful information in it. There are psychiatrists who routinely send copies of the letters they write to GPs to their patients. If they're suggesting referring you to a mental health team, I'd ask for a copy of the referral letter. If I couldn't get any satisfaction, I'd write a formal letter to my psychiatrist and ask for a diagnosis, or differential diagnosis (list of potential conditions that they think might be possible, if they aren't sure); you could even ask for a written response.

There are other conditions apart from schizophrenia that have a prodrome, or prodromal phase, although the only one I'm aware of I'm pretty sure you would have been told about, if that was the diagnosis (bipolar).

I really hope you get some clarity, probably what is going on is that they're unsure themselves, as your psych is definitely a better source of information about what is going on for you than google (though I can definitely understand your frustration).