Family and Caregiver Schizophrenia Discussion Forum

Diagnosis Information

Hi,

I am new to this forum. My Son was diagnosed with “unspecified Schitzophrenia”. Is anyone here familiar with this type of schitzophrenia.

I would appreciate any information.

Thank you
Vivian

It just means they’re not yet sure which type of schizophrenia he has

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Hi,

Thank you for replying. It has been a long road and not sure if they will ever figure it out. Like many, there was also substance abuse.

Thanks again. Much appreciated.

Vivian

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Subtypes of schizophrenia were scrapped as diagnoses in the DSM-5 for various reasons and had fallen into disuse even before it came out. Schizophrenia is now thought of as more of a spectrum with the vestiges of the classic “subtypes” used as descriptors of clusters of symptoms rather than “types”.

In the draft process they considered scrapping the Schizoaffective Disorder DX too, but it lingers on. I think there’s too much emphasis on pigeonholing and labeling of people with SMI outside of the professional sphere. There aren’t specific drugs or treatments for SZ “subtypes”, but some AP drugs and treatments work better on the mood component of SZA which may be the rationale for retaining separate diagnoses.

My psychiatrist is one of a growing number of psychiatrists who refuse to deal with insurance companies, but he provides me medical coding for filing claims. He uses unspecified psychotic disorder, so I avoid falling into SZ, SZA and Bipolar Disorder categories and it makes filing claims easier.

Here’s an article which explains the changes to the DSM and the rationale behind the changes to scrap SZ subtypes.

Edit: in case it’s not clear, all schizophrenia diagnoses are ‘unspecified’ now per DSM-5 guidelines. When you exist on a spectrum there aren’t specific diagnostic categories anymore.

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Hi,

Thank you for your reply. I have a good understanding of the DSMIV and IV and thank you for clarifying it. My concern is all these subtypes that are now spectrums are they treated in the same manner when it comes to medications.

My Son being “unspecified” is basically missing a couple of symptoms so how can the dx be certain?

Vivian

Hi @Vivib, Welcome to the forum, what symptoms do you think your son is missing?

Hi,

Psychiatrists confirmed that he is missing the hallucinations and hearing voices.

He was admitted to Hospital several times but the longest was 4 months and a year later 3 months.

Vivian

Essentially, yes, with some caveats. AP drugs work by affecting the balance of certain receptors on the brain as a whole. While the mix of affected receptors vary between drugs, there aren’t specific “anti paranoia drugs” or “anti catatonic drugs” etc. And even if there were, in this model a client’s mix of symptoms might change over time. A psychiatrist might prescribe drug and dosage based on experiences with other patients, but I think you are searching for certainties and absolutes where none exist. Since we don’t understand what causes SZ and have a limited understanding of how the brain works, we don’t have the luxury of certainties. In my experience psychiatrists make drug choices based on symptom and severity regardless of diagnosis anyway, since there’s overlap of symptoms of SZ, SZA and bipolar and unipolar depression and all these illnesses can be comorbid.

My read of the DSM-4 is a schizophrenia diagnosis was possible under its guidance without hallucination symptoms as it has a similar “two of the following:” criteria clause. From my perspective this seems wise. Given the possibility of anasognosia, paucity of speech, catatonia and other factors in people with SZ, hallucinations are likely significantly underreported and unobserved.

A huge part of my recovery from schizophrenia was learning to mask symptoms, and even in my early unmedicated recovery I could be floridly hallucinating and delusional and no one, not even my psychologist could tell. Same for times afterwards when I experimented with going off medication, and yet again both my psychologist and even my psychiatrist couldn’t tell. And frankly, my experience is psychiatrists rarely ask directly about hallucinations, likely either assuming patients would lie or perceive these symptoms not as voices or hallucinations per se. There’s a huge social stigma surrounding admitting “hearing voices” and a fear of psychiatrists punitively over-medicating you, so you learn pretty quickly it’s often not safe to talk about them and other symptoms.

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Hi Vivib,

When we were first told of our son’s diagnosis, we were very doubtful of its accuracy.

My husband and I didn’t know anything about schizophrenia. When we were told about our son’s diagnosis, we didn’t believe it. We took the literature on schizophrenia up to his brother and asked him to read it and go over it with us. The three of us are intelligent people, we could not say conclusively that our family member had scz.

After completing the NAMI Family to Family course, reading all of the recommended resources and consulting with our other son, we decided it was inconclusive. If hearing voices is the “hallmark” of scz, we had no proof of any kind that he was hearing voices. He certainly had not told us he was hearing voices.

In the earlier years, my son’s scz days were quite far apart, he would have a bad day and recover to act quite"normal" for weeks - until there was another bad day. As time passed and the schizophrenia progressed, he began to have more bad days than good days.

We had always been close. He would tell me about things that concerned him- like when he said an entire town was out to kill him. I patiently discussed it with him and tried to soothe him by pointing out that no damage had been done to his car, home or belongings. I was try to rationalize with his irrational fears. He told me he had social anxiety and depression and I believed him.

After he was fired from his job, we went to his place to find out what had happened. That day he told us that we were calling him a name. We said we knew we were not calling him a name and he told us that we didn’t realize it but that was what we meant. This struck us deep in our parental hearts and we realized there was some sort of serious problem. We moved him home to live with us. Still we saw no signs of voices or anything that could be called an hallucination.

One day, months after we had moved him into our home, I entered the living room behind where he was watching television, he had no idea I was in the room. He turned and looked at the empty chair next to him, laughed delightedly, and asked “how do you know these things?”

After that day, we realized there were times he was leaving the room suddenly to go into his bathroom. One day I crept up to the bathroom door and could hear him talking to someone.

Another day he wanted to talk with me about a man that had approached him on a green at the golf course. I asked him, where did the man come from? He didn’t know. I asked him,“where did he go after he spoke with you?” He didn’t know.

I consulted our Family to Family leader and she believed he had experienced an hallucination. There have been other times since then, all with similar themes, someone suddenly approached him, someone tried to get into his car, or someone walked up to him in a threatening manner. These events frightened him which is why he wanted to tell me about them.

As the disorder progressed we learned to recognize psychosis by changes in his behavior. Other people take him at face value and usually don’t see the brain disorder. There are experienced people - especially higher up in the medical profession- that will recognize it from his behavior. I can see it as they become aware - others are totally clueless. RNs are especially good at catching on - sometimes I deflect them by saying something that suggests my son is “special”. This works great as they automatically began smiling and talking gently to him, which is exactly what he needs to counter any cruel voices he is hearing. To my knowledge, my son has never been hospitalized for mental illness. He has been hospitalized with his two other health conditions. He always wants me to accompany him if he is being hospitalized, I handle the “hiccups” that need handling.

As @Maggotbrane wrote,

My son can suppress his psychosis and mask his symptoms for a short amount of time. Longer periods of close observation will reveal them.

In those early years we had no experience with scz, we didn’t know what we were seeing. Your son has had some long hospital stays surrounded by professionals who are familiar with brain disorders. Sadly, I suspect they are probably correct.

Take care, hope

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Hi,

Thank you so much for sharing. My Son as well very close to me and I as well have an insight into the condition as my career was mainly in mental health insurance claims.

Having said that I am still shocked at the dx. I am not sure I have accepted it. My Son on the other hand was experiencing issues since the age of 18 and we acted fast with treatment.
Unfortunately he had already figured out that something was not right and turned to drugs and alcohol which made it very difficult to be certain.

Sadly my Son said he knew he had it before the doctors did as he is very academically smart and did the research.

However as a result he is 30 today was unable to finish his degree and continues to struggle. He is not as independent as he should be. He recently moved out with his girlfriend of 7 years and is now engaged but has not been able to keep a job.

The jobs he does well, which is part of his OCD and good conscious. He has never been fired. He just walks away.

I worry about his future.

In cases like ours is it prudent to have someone assigned to his care in case something happens to us his parents.

Thanks again

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Thank you for your reply. I agree the brain is very complex.

Vivian

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Hi Vivian,

We did feel it was necessary to have someone assigned to our son’s care if we predeceased him. We also needed to make a will that would keep our son’s ssi, ssdi, Medicare and Medicaid intact while providing him funds for the needs that aren’t covered by Medicare and Medicaid.

We asked his brother first - after making sure his brother understood that we understood he might not want the position and that was okay with us. HIs brother did accept the responsibility, but, wanted us to have someone else in the back up position in case he should predecease his brother. My husband and I do travel with our other son on extended trips.

We have two good family friends that we thought could handle the responsibility. One is 12 years older than our son and the other is basically the same age as our son. Both agreed to be back ups - together. We had it written up in the trust (in Texas this required an attorney who had extensive experience in trust planning) Its not a simple will, the trust has to be put together properly to be effective. The attorney did not want us to place a person in charge of the trust. They felt it should be administered by a third party like an attorney - we had no concerns about our son cheating his brother and we set it up that the two people in the back up position can only disperse funds if they both sign off.

This part gets complicated. We divided any inheritance into 2 parts, 1/3 going into the trust for our son with scz and 2/3 going to our other son. Our intent is that the “extra” 1/3 could be used by our son to purchase larger housing in case our son with scz would one day be able to live with his brother.

There were timing and situational issues to be resolved - they had to write my son’s will at the same time in case he only survived us for a short time.

If it goes to the “Back Ups”, they inherit the same 2/3 with the same planning in mind - except they would each get 1/2 of 1/3 in their own name and the other 1/3 jointly.

We slept much better once we had it in place. The importance of having it was stressed to us in Family to Family.

Like yours, mine left jobs - until the day he had a bad psychotic episode at work. That was the day he became disabled. He is not safe to be in a workplace due to his paranoia issues.

You are most welcome, and best wishes to you and yours.

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Hi,

Much appreciated.

All the best

Vivian

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Does he have delusions? There is such a thing as delusional disorder that’s not schizophrenia

Hi,

Thank you for your reply. He has a lot of OCD which sometimes no ñw that I am thinking about it again could potentially be dellusuions. His OCD is in thought disorder.

Vivian