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The Mystery of the Undisclosed Diagnosis

  • Posted on November 12, 2014 at 10:00 AM

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

Back in Time

  • Posted on July 17, 2014 at 10:00 AM

A friend came to visit while I was sick. I tried to stay away, but she poo-pooed that idea. I met her twins—a boy and a girl—for the first time (at least it was the first time I could remember). They’re fifteen months old and their adventures made it perfectly clear that our house was no longer baby-proof.

Over ten years ago, I went on a journey of discovery. I found Birth to Three, I found a doctor to diagnose first one son, then another. I navigated IFSPs and IEPs. I wrangled with diagnoses, labels, and services. And now I see this friend beginning a similar journey.

She knows she’s “different” and she has received diagnoses of disabilities for herself. Now, she’s seeing herself repeated in her daughter and she’s seeing other traits that are duplicated but different in her son. They both have developmental delays, though they started services early enough that they’re “almost caught up.” They both have sensory issues and may or may not have autism, Asperger’s, and/or epilepsy. (I didn’t see any pronounced signs of any of these diagnoses.)

This woman’s situation is complicated by the lack of a spouse, an antagonistic “support system,” and the involvement of social services. As a person with disabilities, she was vulnerable to the maneuverings of people who wanted CPS to remove her children from her home. Now, she’s taking the hard road back to regaining custody.

Hers is a different journey than mine in many ways. There are things Mark and I have no experience in. There are other things that we do know more about than she does. We can share the wisdom of our experiences. We can empathize with her frustrations and her struggles. We can remind her that, above else, her first job is to acknowledge that her children are different, that it’s okay that they’re different, and that focusing on what is and isn’t normal is not the best way to serve her children.

We can be for her the friend we didn’t have when our children were that little. It seems small, but it’s something that means a lot, at least to us.

Waiting to Know

  • Posted on May 26, 2014 at 10:00 AM

So, I went to see the rheumatologist. On the one hand, she could confirm that all of my symptoms are consistent with fibromyalgia. On the other hand, she told me that fibromyalgia is only diagnosed when all other alternatives are exhausted. Now, I’d thought I’d been through that already. When I first went in to see my regular doctor with my symptoms – before they’d gotten worse – he had the lab draw a lot of blood and run a lot of tests. Apparently, the rheumatologist knew more tests that should be run before a diagnosis of fibromyalgia could be confirmed.

I did quite a lot of research, so I was rather surprised when she started listing off possibilities that I’d never heard of or never considered. Ironically, while some of these possibilities seem a lot scarier than fibromyalgia, she was adamant that all of them are considerably more treatable than fibromyalgia and any one of them would be a better alternative that settling for an inaccurate fibromyalgia diagnosis. She reinforced this idea by telling me that she wouldn’t be upping my dosage for the drug my regular doctor had prescribed, because the improvement I was seeing was “as good as it gets.” She did, however, prescribe an additional medication to help my muscles relax enough so I could sleep better. Perhaps the fact that this new medication has only had marginal results is indicative that she might be onto something. I also learned that I already have some arthritis, which may be why rheumatoid arthritis came up as a possibility.

So, not only did she have the lab draw even more blood for even more tests, she also had me go in for an X-ray. To top it off, I’ll be having a sleep study done in the middle of June. (I wonder what will happen if I can’t sleep for them during the study.)

It will be another month before I see her again and see what all of this means. Will it be fibromyalgia or will I be researching something new? Will I get a treatment plan or is this really “as good as it gets?” Personally, I’m inclined to hold out for something better, particularly when it comes to the concentration factor.

Questioning

  • Posted on October 9, 2010 at 3:21 AM

Next week I’ll be addressing the issue of bullying.  I’ve been meaning to do so for weeks, but it’s a complicated and an emotional topic.  So I’ve put it off.

Today, I’ll be putting it off one more time.  Earlier this week I spoke to a counselor regarding a matter I’m not going to discuss.  However, in the process of this discussion the topic of bi-polar disorder came up—in relation to me, not my husband.  I got from this discussion a referral to a psychiatrist, who I saw today.

Fifteen minutes into the conversation the psychiatrist was convinced I was not bi-polar.  In going through her notes and the referral, she determined that a likely point of confusion was my use of “cyclical” to describe my depression.  I used cyclical, because I experience depression in semi-predictable cycles throughout the year.  My depression follows a pattern that allows me to recognize when I’m getting depressed, know that I’ll get un-depressed, and recognize when I’m coming out of the depression.  To me, that implies a cycle. 

Apparently, cyclical means something else to psychologists and psychiatrists.  It means seasonal affective disorder, manic-depression, and other disorders that involve a cycle.  But, unless the cycle of depression is attached to seasonal differences, cyclical depression is not recognized as such—they call it recurrent depression instead.

Thus, the interpretations of the experiences I describe can hinge on a single word.

In discussing what I do with the psychiatrist, I also asked if she was familiar with neurodiversity.  She’d heard about it; she’d read about it.  But her interpretation of whatever she’d read was that neurodiversity was anti-psychology and anti-psychiatry.  Admittedly, some people within the greater neurodiversity community are anti-psychology and anti-psychiatry; but I don’t think that reflects the movement as a whole.

What I think the movement does reflect, however, is the willingness to question the authority and expertise of medical professionals.  I’ve encountered some psychologists who regard this as a personal threat or a personal attack and I’ve encountered some psychologists who welcome the scrutiny.  However, in my limited experience, those who resent it seem to dominate the profession.

Personally, I think it’s important to question all of those in authority, not just those in the medical profession.  Not to do so obstinately or just for the sake of being uncooperative, but to do so because human beings—all human beings—are fallible and so are human constructs, including science (and, yes, religions, too).  We are fallible.  Our authority figures and experts are fallible.  And, unless we’re willing to acknowledge that and question beliefs (including our own), we’re going to be stuck with badness—bad science, bad religion, bad societies.

Luckily, I’m familiar enough with both myself and bi-polar disorder that I was highly skeptical of this hypothesis.  I brought that skepticism with me to my appointment today, and found a doctor who was willing to listen.  That’s good.  But I can imagine a situation where expressions of skepticism are unlikely or where the doctor isn’t willing to listen.  I know both happen.  And on such a small thing as two different interpretations of a word a wrong diagnosis can be made when all other evidence indicates that the diagnosis is wrong.

And we’re not supposed to question that?  I just can’t buy that.