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← Return to From “Not Complex Enough” to “Too Complex to Route” Anyone Else?
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From “Not Complex Enough” to “Too Complex to Route” Anyone Else?
Brain & Nervous System | Last Active: May 2 11:51pm | Replies (15)Comment receiving replies
@aethelwulfe: You have definitely done quite a bit of research here and I can definitely relate to having to be your own advocate. This is another link I found: https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/mayo-clinics-center-for-sleep-medicine/mac-20555243
Additionally, the organization that oversees sleep medicine professionals in the US is https://aasm.org/. They may be a helpful resource for you.
Please let me know once you connect with a provider who can hopefully assist you.
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@grammato3
I was recently declined by the Sleep Medicine department, the explanation was that they didn't know what else they could offer beyond what my current providers are doing. The difficulty is that my current providers are a respiratory sleep specialist and a psychiatrist, and both have told me they have no idea what is causing my total insomnia or the neurological symptoms that come with it.
Because of that, I called the appointment office and asked my case to route to neurology instead. I also have involuntary unilateral explosive movements, and a hip twist. So it seems like an appropriate specialty.
My concern with this, and the appointment rejection is diagnostic overshadowing. Once a psychiatric diagnosis is in the chart, it can act like a total eternal eclipse, everything gets interpreted through it, even when the symptoms don't fit. I am worried that is happening in my case, especially since the many treatments I've been given so far haven't worked, made things worse, and no one has been able to explain the underlying cause.
I am hoping neurology will at least review the case, because the sleep wake issues I experience do not seem to fir the respiratory or psychiatric categories I have been placed in. I don't drink, I don't smoke, I don't use illicit or recreational drugs, I don't drive recklessly, I don't get arrested, I don't go on spending sprees, I don't self harm,I don't have delusions of grandeur, and when I am awake for days, I spend a lot of time and effort trying to sleep, and I certainly don't feel euphoric, even if paradoxically for a moment sleep deprivation triggers more psychical energy biochemically; one other key difference is that I know I am sick. My concern is that the bipolar diagnosis is not only inaccurate but has repeatedly lead delayed appropriate medical evaluation. Several providers have acknowledged they don’t know what is causing my symptoms, yet the psychiatric label keeps redirecting the focus away from neurological work‑ups that have never been done.
Though I messaged the AASM I will continue to look and see if there is anyone, but CBT-i is really not going to cut it.