Psychosis Possibly Linked to an Occupational Disease: An e-Patient’s Participatory Approach to Consideration of Etiologic Factors

 

 

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Abstract

Summary: The purpose of this narrative-analysis is to: Consider medical conditions and substances that may induce psychotic symptoms; identify some unique challenges that providers and patients dealing with psychotic disorders must overcome in order to establish effective recovery strategies; and to illustrate the benefits of participatory concepts in mental health care. This article describes one patient’s experience with discovering that her psychosis might have been caused by toxic encephalopathy from occupational exposure, and the benefit she gained from becoming an active participant in her own care.

Keywords: psychosis, mental health, mental illness, bipolar disorder, schizophrenia, violent behavior, e-patient, participatory medicine, Psychiatric Advance Directives, PADs, Joint Crisis Plans, JCPs.

Citation: Mangicaro MA. Psychosis possibly linked to an occupational disease: an e-patient’s participatory approach to consideration of etiologic factors. J Participat Med. 2011 Mar 28; 3:e17.

Published: March 28, 2011.

Competing Interests: The author has declared that no competing interests exist.

The Importance of Patient Empowerment in Mental Health Care

As an individual who has experienced psychotic episodes, I believe that the emergence of participatory concepts in mental health care can empower consumers to become engaged in recognizing symptoms, selecting treatment options, and working in partnership with providers to develop illness self-management recovery programs.[1][2] Patient empowerment is critically needed to strengthen the mental health care system. Innovative strategies targeting informed, safe decisions are needed in order to effectively involve mental health consumers in the prevention and recovery of psychotic disorders.

My journey to becoming an empowered patient started by developing an understanding of psychotic disorders and the dismantling effect they have on one’s life. Psychosis results in loss of contact with reality, sometimes including delusions, insomnia, hallucinations or impaired cognitive functioning.[3] Psychotic behavior affects the ability to manage and maintain personal relationships, employment, medical care, and in some cases, housing.[4][5] A psychotic experience distorts an individual’s belief system and perceptions. Most individuals experiencing a psychosis have poor insight regarding their illness and refuse to acknowledge that a problem even exists.[6]

Involuntary commitment and incarceration often become necessary in cases of severe mental illness.[7][4] During times of psychiatric crisis that results in involuntary commitment, people may experience a frightening loss of choice and self-direction, which can be damaging and traumatic. My experience led me to believe that forced hospitalizations failed to encourage participatory concepts. While intervention may be deemed an absolute necessity during a mental health crisis, coercive psychiatric treatment tends to have an adverse effect on patient empowerment because of the loss of autonomy and exclusion from participation in treatment options.[8]

To help overcome this, many mental health care advocates now recommend Psychiatric Advance Directives (PADs), or Joint Crisis Plans (JCPs). PADs are legal documents allowing individuals to express their wishes for future psychiatric care and to authorize a legally appointed proxy to make decisions on their behalf during incapacitating crises.[9][10] The JCP is a statement expressing a mental health consumer’s preferences for treatment in the event of a future psychotic episode. It is developed with the clinical team and an independent facilitator.[11][12] Use of these documents offers a potential alternative to compulsory treatment. They also act as an innovative tool for patient empowerment regarding treatment options and recovery strategies.[9][10][11][12]

Barriers to Patient Empowerment

An important step in developing a partnership with my providers involved gaining an understanding of the psychiatric labeling process. The American Psychiatric Association (APA) publishes The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) as a handbook for mental health professionals listing the different categories of mental disorders and the criteria for diagnosing them. It is used worldwide by clinicians and researchers, as well as insurance companies, pharmaceutical companies, and policy makers. Psychiatric diagnoses are descriptive labels, and do not imply the etiology of these conditions. Thus, a psychiatric diagnosis labels a pattern of signs and symptoms, but offers no hypothesis concerning the cause of the illness.[13]
Becoming proactive in exploring recovery strategies and effective treatment options for symptoms of mania and psychosis led me to ask a lot of questions and research the possibility of a root cause. While my original diagnosis was bipolar I disorder with psychotic features, through in-depth occupational assessments and laboratory testing, my providers later classified my symptoms as a substance-induced psychotic disorder resulting from the occupational exposure causing toxic encephalopathy.[14][15][16][17][18][19]

The DSM-IV classification of “Schizophrenia and Other Psychotic Disorders” includes “Psychotic Disorder Due to a General Medical Conditions” and “Substance-Induced Psychotic Disorder.” The APA recognizes a wide array of medical conditions and substances that can induce a psychosis, as well as violent criminal behavior.[20][21][22][23]

Psychotic disorders create many obstacles that must be overcome for patients to become enabled, empowered, and engaged. As exemplified in this narrative, overcoming these obstacles and establishing provider-patient partnership has the potential to improve treatment results and possibly help reduce health care costs, crime rates, recidivism, and homelessness. My goal is to promote provider-patient partnership among consumers of mental health services by advocating for increased awareness of the potential for association of psychotic symptoms and etiological factors such as those described here.

Because of the broad spectrum of etiologic factors of psychosis, it is easy to overlook the possible relationship of toxic exposure. Since psychiatrists receive little information about this during training, toxic etiologies of psychiatric syndromes are not often recognized. Severe encephalopathy resulting from high levels of alcohol intoxication is described in standard texts of psychiatry and neurology.[24] It is well established that certain other toxic substances also have the potential to disrupt normal brain physiology and impair neurological homeostasis.[25] These symptoms may include headache, fatigue, weakness, balance disturbance, impaired coordination, reduced memory span and concentration, as well as mood and personality changes which can be assessed as bipolar disorder or schizophrenia.[14][15][25]

In the spring of 1996 I suffered an acute manic episode from toxic encephalopathy. A 15-year span of employment in the prepress department of a high volume printing company resulted, I believe, in exposure to high levels of noxious fumes in poorly ventilated conditions. I handled organic solvents on a daily basis without protective equipment and in a poorly ventilated area. Substance exposure included various organic solvents containing n-hexane and toluene, photographic developer and fixative, and heavy metals such as lead, mercury, and cadmium.

Psychotic symptoms first occurred at the age of 33. I had no prior history of mental or physical disease. Visual hallucinations were the initial symptoms, which rapidly progressed to racing thoughts, severe insomnia, pressured, incoherent speech and difficulty concentrating. Manic symptoms were prevalent with religious delusions, thought broadcasting and the feeling of ecstasy. Family intervention took place and I was quickly diagnosed at a local hospital and treated for bipolar I disorder, with psychotic features.

Two weeks after the initial hospitalization the recovery process was set back by the physically disabling side effects of severe-Parkinson-like symptoms and tardive dyskinesia induced by the medication haloperidol (Haldol®). My lack of information about my diagnosis and medication side effects inhibited my ability to work in partnership with my provider. At that point, I was not an easy patient to deal with. I felt that the medications were making me worse, not better, and, against the advice of my psychiatrist, I temporarily went off of all medications. I realized quickly that this was a mistake and that I had to depend on my psychiatrist’s recommendations in order to get better.

Two years of psychiatric intervention with medication management resulted in only temporary abatement of symptoms with numerous side effects. Continued psychotic episodes required extended hospital stays and medication adjustments. In an attempt to control symptoms of mania and psychosis, I was prescribed various mood stabilizers and antipsychotic medications, such as valproic acid (Depakote®), clonazepam (Klonopin®), and olanzapine (Zyprexa®). Lithium was the most effective medication that I used in order to achieve some level of stability. Unfortunately, the effect was not long-lasting and it had a negative impact on my thyroid.

On several occasions the side effects from the antipsychotic medications were so severe that I could not tolerate them and I became noncompliant. Besides the haloperidol-induced neurological problems, I experienced hypothyroidism (TSH level 148), elevated prolactin levels (218), and oversedation resulting in rapid weight gain (80lbs. in six months). I did not like the fact that I was not warned about the possible harmful side effects of the medication I was prescribed and became very cautious in trying new medications.

My initial response towards being diagnosed with a severe mental illness was an overwhelming feeling of embarrassment coupled with low self-esteem. I had no interest in participating in counseling, psychotherapy, support groups or educating myself on matters concerning bipolar disorder. The only course of action I accepted was medication management which entailed a brief session with a psychopharmacologist to adjust medications as needed. The stigma of being labeled “mentally ill” contributed to my lack of motivation to become an educated and informed mental health consumer.

Deciding to Become an Empowered Patient

After my second psychiatric hospitalization, I made the decision to become a more engaged patient and to expand my knowledge and understanding of severe mental illness. I began attending bipolar support groups, went into counseling, and signed up for a night college course in abnormal psychology. At that point, I realized the illness had affected my cognitive abilities and working memory. The quality of my work at the printing company suffered from my inability to concentrate and lack of energy.

Medication management alone was not working to control psychotic episodes and I could not seem to find a way to maintain a productive lifestyle. I experienced unusual manic spending sprees and had trouble managing my personal finances, as well as my relationships. Each manic episode brought a new level of problems.

The rapid weight gain made me feel very unhealthy and for the first time in my life I had elevated blood pressure and cholesterol levels. The atypical or second-generation antipsychotics (SGAs), that I was taking are associated with obesity and other components of metabolic syndrome, particularly abnormal glucose and lipid metabolism. Metabolic syndrome and cardiovascular diseases are important causes of morbidity and mortality among patients with severe mental illnesses[18] I became tolerant to medications that were prescribed for insomnia and it was difficult to find a balance between adequate sleep and oversedation. I felt my overall health was at risk and I needed to incorporate other modalities in order to find relief from continued psychotic symptoms.

Through an acquaintance at a bipolar support group, I was introduced to the use of functional medicine and to orthomolecular concepts. Orthomolecular concepts, developed by Dr. Linus Pauling and Dr. Abram Hoffer, involve attempting to manipulate concentrations of substances normally present in the human body such as essential vitamins, minerals, and omega-3 fatty acids in an attempt to control mental illness symptoms.[26] Practitioners in this field believe that nutritional supplement treatment may be appropriate for controlling certain types of mental disorders, including bipolar disorder and schizophrenia.[27] They use an extensive battery of laboratory tests to determine whether toxicological, biochemical, structural, physiological, and genetic abnormalities are playing a role in their patient’s symptoms. From the information I had been presented with, an orthomolecular approach seemed worth a try.

My psychiatrist discouraged me from using vitamin supplements and would not accept me as a patient if I incorporated this approach. So I sought out my original provider, who was willing to work in partnership with me as I became more proactive in exploring various treatment options. His familiarity with my case was a benefit as he was aware of the numerous problems I had in trying to find a medication that had long-term success, without adverse side effects. We were in agreement that I was acting as a responsible patient by implementing complementary therapies and he was comfortable working in partnership with my other providers.

The battery of testing revealed various abnormalities including past exposure to lead found in hair analysis (1.92 ppm). Based on the severity of clinical symptoms that presented, the physician who ran the tests recommended trying a series of intravenous chelation treatments as an option to reduce the overall burden of toxins in my system. Lead exposure is arguably the oldest known occupational health hazard and chelation therapy is considered to be the best-known treatment against metal poisoning.[24[30][31][32] ]EDTA (ethylenediamine tetraacetic acid), injected into the blood, binds with the metals allowing them to be removed from the body via the urinary system. The treatments involved supplementing with additional vitamins and antioxidants, as well as follow-up lab work.[32] The initial treatments were covered in full by my insurance company. The first few treatments induced flu-like symptoms, dizziness, and an urgency to urinate. Twenty-four-hour urine analysis after the first treatment indicated excretion of lead, mercury, aluminum, and arsenic.

Within an eight-month period I received a total of 22 chelation sessions in combination with a multimodal approach of various other complementary therapies (massage, acupuncture, bioenergetic therapy) to find relief from insomnia without the use of medications. The chelation sessions took about four hours each. Reactions I had during the detoxification process were physically draining. During that time period I experienced visual hallucinations without manic symptoms, waking at night with sudden severe headaches, numbness down my left side and cognitive difficulties.

After the 10th chelation treatment, I began feeling better and noticed a marked improvement in my night vision. Gradually the physical problems cleared up. The visual hallucinations stopped, my cognitive abilities improved and the insomnia subsided. The improvements in my health allowed me to discontinue, without ill effects, all antipsychotic medications previously prescribed for psychosis, delusions, insomnia, and mania. Followup hair analysis indicated reduced lead levels (.52 ppm).

The abnormal psychology course I took covered the diagnosis of substance-induced psychotic disorder and in reviewing my lab results I became suspicious of the relationship between chemical exposure in the work environment and symptoms of psychoses.[14][15] The acute onset of my symptoms, along with the fact that I had never experienced prior bouts of depression, also made me ponder the accuracy of my diagnosis of bipolar disorder.

I began research at the local medical library regarding the association of chemical exposure and severe mental illness. I was surprised how quickly the librarians located some initial studies regarding exposure to lead and psychiatric disorders, including past exposure to lead found in hair analysis and symptoms of bipolar disorder.[33][24] The librarians gave me instructions on how to use the internet and Medline to accumulate additional information regarding psychiatric manifestations from occupational exposure to chemical toxins.[14][15][16][18][19]

I presented the research to one of my treating physicians, who then recommended further evaluation at an occupational health clinic. At that point, I resigned from the printing company and initiated a worker’s compensation claim. After an in-depth occupational assessment, I was diagnosed with substance-induced neuropsychiatric and cognitive disorder related to massive exposure to a variety of substances including toluene, xylene, heavy metals and methylchloride over an extended period. Extensive neuropsychological evaluation supported the opinion of neurocognitive and psychiatric deficits as a result of chemical trauma from toxic encephalopathy.

During worker’s compensation proceedings, sworn depositions and opinions were given by an occupational physician, a neurologist, a psychiatrist, and a psychologist regarding the diagnosis of substance-induced psychosis, an organic brain disorder and toxic encephalopathy (multiple chemical sensitivities). I was awarded a settlement for the claim in reimbursement of medical expenses and lost wages.

Recovery

Over the past decade, I have experienced various health problems and had to deal with periodic bouts of insomnia.[34] An outbreak of ocular shingles, an abscessed tooth following extensive dental work and the ingestion of over-the-counter cold and flu medication have exacerbated symptoms of mania and psychosis.[33][34][35] Symptoms quickly abated in each circumstance and the only medication I am currently on is levothroxin to treat hypothyroidism.

Becoming proactive in my health care and exploring the underlying causes of psychotic symptoms led to a significant change in treatment with a successful outcome. In light of the numerous substances that can induce psychotic disorders, it is important that clinicians move beyond diagnosing symptoms and, by incorporating environmental exposure assessment into appropriate psychiatric evaluations, gather information that may allow identification of underlying causation and effective symptom relief.[25][17]

While the particular sources of chemical exposure were unique to my employment, the difficulties involved in patient empowerment and recovery from psychotic disorders are ubiquitous. I was also fortunate that just the elimination of the source of the exposure helped to reduce the frequency and severity of my psychotic symptoms. Education and awareness are key factors of participatory concepts that I have applied to my recovery.

Patient empowerment and advocacy for ethical mental healthcare treatment needs to include an expanded awareness of the wide array of medical conditions and substances that induce psychotic disorders that are distinguishable from bipolar disorder, or schizophrenia. A greater awareness of participatory concepts in mental health services is needed. Providing patients with the necessary tools for empowerment is an important step in their recovery process and has the potential to improve outcomes in patients with mental illnesses.

References

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Copyright: © 2011 Maria A. Mangicaro. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

Comments

43 Responses to “Psychosis Possibly Linked to an Occupational Disease: An e-Patient’s Participatory Approach to Consideration of Etiologic Factors”

  1. Maria Mangicaro says:

    Author’s Note:

    Below is a link to the website for the National Resource Center on Psychiatric Advance Directives. The website explains that:

    “Psychiatric advance directives are relatively new legal instruments that may be used to document a competent person’s specific instructions or preferences regarding future mental health treatment. Psychiatric advance directives can be used to plan for the possibility that someone may lose capacity to give or withhold informed consent to treatment during acute episodes of psychiatric illness.”

    http://www.nrc-pad.org/component/option,com_frontpage/Itemid,1/

  2. Maria, I’ve only now read this, and I just tweeted: “*Astounding* mental health e-patient story in @JourPM. Patient crawls herself out from under a truck, practically.” I’m just amazed.

    You do such a great job of illustrating how a patient thinks and acts when being responsible for his her situation and doing everything possible to help the case.

    And what odds you overcame. So impressed.

    Congratulations, and thanks for writing this. I hope many will learn from it.

  3. Dave,

    Thank you for your kind words and it is an honor to hear from you.

    Your story is truly amazing and the efforts you put forward are helping so many others.

    Recovery from psychosis is only possible by the patient becoming proactive in their health care. Patient empowerment and participatory concepts have the potential to become a driving force in mental health care reform.

    Warm Regards,
    Maria

  4. Max Spencer says:

    Hi Maria,
    Looks like you had a clear cut case of toxic poisoning. After that you had the misfortune to fall into the hands of the Psychiatric Biomed industry and undergo progressive deterioration at their hands. If you had not taken matters into your own hands you would have gotten even worse.

    “My psychiatrist discouraged me from using vitamin supplements and would not accept me as a patient if I incorporated this approach.”
    Yeah, this guy tried to blackmail you to gain control of both your body and your mind. You can see he is neither doctor nor acting as doctor nor healer but is basically a persuasionist, his job is to persuade people to get on the drug program and make the drug program fit – sort of like a single minded robot salesman.
    Your article is so scientific and uses all the scientific jargon. It’s good for educational purposes I suppose and commendable but it’s not necessary to do so to tell such an obvious story. I mean you could tell it to a different audience in a more user-friendly way.
    I think the audience that would demand this scientific detail approach are actually limited or deficient in their emotional function. Maybe they forced you into this approach?
    ..
    So I suppose then you are the rare case that actually recovered to something that you were before. For most people with serious mental illnesses , this is not the case , the misnomer “recovery” actually means when they resolve their problems they become something they have never been before – their recovery is actually psychological resolution and psychological growth.
    Do you understand the difference?
    Lastly was the toxins all it was? Did you discover any new life of psychological self growth for yourself along this path of unwanted distraction for yourself. Growth principles for the inner life are applicable for everyone. It seems that people like bio-med psychiatrists, controlling parents brainwashed into the brain disease model and the cultivated patients that are medicated to absolute zero emotionality are some oft he main groups that don’t know or have much of an inner life.As well, in the normal population people may or may not develop their inner life depending on the cultural influences they are exposed to. In modern society with it’ strong bio-med influence more and more of the population is influenced to NOT have or be aware of an inner life.
    So , I’m asking if you , along the way of having this unfortunate circumstance rob you of much of your life , at least get something out of it by being more aware of and cultivating your inner life?

    I much appreciate your story. It is very different and interesting.
    Thanks

  5. Maria
    I read your excellent paper with great interest. I have also found orthomolecular medicine helpful for a bipolar disorder – this little-known specialty was co-pioneered by Abram Hoffer, PhD, MD, who I had the honour to meet several times and correspond with for ten years. Abram Hoffer learned how to diagnose patients accurately and recoomend restorative traetment programs which helped thousands of patients recover and live well. I wrote a tribute to Dr. Hoffer on my website http://www.searpubl.ca
    and an article for the Journal of Orthomolecular Medicine – free archives at http://www.orthomed.org – might interest some people who read your paper. Thank you for sharing your inspiring recovery story.

    Sincerely,
    Robert Sealey, BSc, CA – SEAR Publications

  6. Peter C. Dwyer says:

    Marie,
    It is amazing and wonderful that you managed to persist through all that and figure things out. I hope many others read your account and are able to take charge of their own treatment like you did.

  7. Duane Sherry says:

    Maria,

    Great article!

    Many Environmental Medicine practitioners (MDs) have known about this connection (between toxins in the workplace and the fallout to the brain/body) for quite some time.

    Unfortunately,the conventional-side (MDs of the psychiatric variety) continue to insist in a ‘brain disorder’ or lifelong, incurable’chemical imabalance’.

    Hopefully, the conventional-side will catch on to what is so obvious to many of us… namely that toxins in a work environment can affect the brain, by producing symptoms that appear to be ‘mental’ when in fact, they are due to the chemical exposure.

    Thanks for getting the word out!

    My best,

    Duane

  8. Maria,
    The similarities in our stories is remarkable. Though my company’s insurers fought my worker’s compensation claim and I was left penniless with two children, with their father dying from agent orange exposure.

    When this happened to me, almost no one was aware of chemical sensitivities. I had to do my own research and make my own connections.

    I thought I had finally found a doctor smart enough to discuss the issues of chemical exposure and effects with me when I was referred to a specialist at Cone Hospital in Greensboro, only to leave there in tears as he humiliated, condescended and tried to set me up with a psychiatrist for antidepressants.

    He kept saying, “you’re depressed.” I said, imagine getting sick at every job you’ve tried for the last 6 years, separated from your spouse and having 2 children to care for and spending all your measley salary on doctors who don’t know or won’t even consider the causes of your symptoms that you are sure are associated with the toxic chemicals you’ve been repeated exposed to. Imagine having to drag yourself through the day every day with repeated sinus and respiratory infections added to all that.

    And then I told him if I weren’t depressed, I’d be crazy.

    He was like a stone wall. I left in tears, and as I walked down the hospital hall, I noticed a medical library. I walked in , found an index to medical studies on formaldehyde (a one chemical I”m sure I’d been exposed to) and learned about multiple chemical sensitivities – the spreading phenomenon.

    Then I went to the UNC-G library and found a book called Clinical Ecology. In that book it not only explains how and why our modern society is poisoning us, but it also says that most people diagnosed with schizophrenia have chemical AND wheat and other food allergies.

    Because I didn’t have any money and there wasn’t a doctor in NC at the time to admit to the toxic effects of chemical exposures, I sold everything and left for the coast, where I could get some clean air, and finally, though dr. Sherry Rogers books, found a way to heal. And that way did not include taking any more drugs.

    I gave up sugar, ate a lot of vegetables, clean food -no processed foods – no yeast, did homeopathics to detox chemicals after (ALSO) DOING bioenergetic testing, and did only nystatin (the only drug) to kill the yeast from all the antibiotics I’d taken over the years.

    Within a year I felt 20 years old again -completely well, except I still much avoid cigarette smoke, pesticide fumes, perfumes and other organic volatiles.

    I found Doris Rapp’s works and tried to share it and the dangers of pesticides with my school system and was again ignored.

    I hope to put all of this research, along with the recent horror story of my daughter’s nightmare with the mental health system in a documentary film soon.

    I hope eventually stories like mine and Maria’s will be taken seriously. I’m glad yours, Maria, was taken more seriously than mine, which I’m guessing occurred years before yours.

    In my case, by the way, I started as a commercial art student when the markers contained benzene and xylene, and Reagan’s energy crisis had indoor air contained. Then I was exposed diesel fumes while teaching college English to mechanics (I know, weird), and then I got a job in a publishing company. In between I had worked in a hospital billing office and had to flip through carbon-less copy paper, which at the time contained very high levels of formaldehyde (I had one tested at a lab containing 300 ppm formaldehyde).

  9. Great work Maria!

    I am certain that sharing your story can help others in understanding their “mental illness” experience. I was inspired as well as educated on the ways a person can have acute psychosis from hazardous materials. I thank you for inviting me to read it. You are a great writer and a wonderful pioneer. I, for one, am extremely proud of your personal accomplishments. As a fellow mental health pioneer, I know it hasn’t been at all easy but I am delighted to be in wonderful company.

    Despite the trying experience, I encourage you to remain open my Water Bottle Theory behind your “illness.” It’s a theory I’m going to share with anyone willing to listen in hopes of overcoming the stigma and negativity associated with being mentally ill. You and your readers are welcomed to visit my blog and perhaps learn a more “ion” reason for having such an illness. Go to: http://igomene-joseph.blogspot.com/2011_12_01_archive.html.

    Keep up the good work my pioneering friend, the world needs your light and love.

  10. Maie Liiv says:

    Thank you for telling your story. How fortunate you are. When the correct diagnosis is not made, many with chemical injuries succumb to their psychiatric treatments – including ECT. I’m collecting stories for my website – for the Spirits, Survivors and Activists section and would like to use your story. You can also listen to the very last interview Abram Hoffer gave a few weeks before his death. He was quite ill, but insisted on doing the interview and asked us all to carry on his work. All the best to you, Maie

  11. Penelope Brindley says:

    Beautiful strong story. You may know of the book “Brain on Fire”–about the same thing. The author told of being treated very differently when she finally got a neurological diagnosis (vs psychiatric). Need to struggle with that.
    Such good work. penny

    • MariaM says:

      Hi Penelope,

      Thank you. Yes, the symptoms of toxic encephalopathy can be the same as anti-NMDAR encephalitis.

      It would be nice if SUSANNAH CAHALAN, the author of Brain on Fire, became a mental health advocate.

      In her original story her neurologist “estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed.” and he stated: “It’s a death sentence when you’re still alive,” Najjar told me. “Many are wasting away in a psych ward or a nursing home.”

      How can anyone make that statement without lighting a fire underneath mental health advocates to get help for those individuals who are misdiagnosed?

      Honestly most days I could scream to the high heavens that people labeled “mentally ill” are suffering from something as simple as a vitamin B12 deficiency, or lead poisoning and mental health advocates are out making money promoting an agenda they believe in or profit from.

      It is very sad to think of the number of people out there advocating, researching and ignoring the truth.

      I appreciate your comment. Take care, Maria

 

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