Living with Schizophrenia - A Free Periodic Newsletter

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Issue #10/1, September 16, 1996
A Summary of Schizophrenia News and Events
Note: Feel free to forward this newsletter to others
To Subscribe or Unsubscribe send a note to individuals
at the following email address:


We are having some technical difficulties with the new discussion area on the web site. These discussion areas may be out of operation for the rest of this week while we try to resolve the issue. I'll let you know when they are fully operational again.


1. Letters to the Editor
2. Web sites of Note:
The BC Schizophrenia Society
5. Recent Schizophrenia Research Summary

Letters to the Editor:

In this section, I'm going to share input I'm getting from other subscribers. I'm hoping that it will prompt further emails to me that address these subjects.

I've just come from my meeting of O. F. O. S. ( Ontario Friends of
Schizophrenics) and we we're talking about all the t. v. shows we've missed on
schizophrenia because we didn't know they were on. The "Shirley" show had a
show on mental illness and Pamela Wallen had a show specifically on
schizophrenia. Most of us
didn't see them. Becuse of your newsletter we did see Barbara Walters
Margot Kidder. Thank you very much for that.
My question is "Is there any way we could know in advance of programs
about this
I look forward to the information you send out . It has helped me a


Amy said:

One thought I have on GROUP 2 would be to also focus
on family member tools for dealing with a loved ones afflicted with
schizophrenia. I know this site is mainly for people WITH
schizophrenia, but that disease effects not only that person but the
whole family - so treatment should be geared the whole unit.

Editor: Amy, I want to let everyone know that the The Schizophrenia Homepage web site is focused on all aspects of the illness schizophrenia - I believe very strongly that ideally all areas have to be addressed - the tools that help the family cope (actually almost all the information on the web site right now is oriented toward this area) as well as the researchers, the individuals with schizophrenia, and the care-givers, etc. that work on a daily basis with those who have the illness.


Shirley mentioned:

Just a comment. When I clicked on peoples' names and it told of
their interests. I didn't know if they had a child with schizophrenia
or if they themselves had it. So I e-mailed only those who I could
relate to. It's nice to know people's interests. But do you think that
if you read 1. I like knitting and horseback riding
2. I have a son 25, suffering from schizophrenia.

Which one would you e-mail ? For me it would be someone
that I could identify with. Maybe along with their interest, they
might mention firstly where schizophrenia is in their family.

Editor: I think you've got a great idea. Yes, when we get the discussion groups up and running again I encourage everyone to enter this in their personal profile (this is the information that you enter when you "join" the discussion group, and can be changed at any time from the "main menu").

New Web sites of Note:

Web Address:

The BC Schizophrenia Society
(British Columbia, Canada)
A great sample of a web site from a local schizophrenia organization. I'm hoping that other organizations around the world will also create sites like this. Free space on the web site is available to any organization that so needs it.

Web Address:

The Canadian quarterly magazine Schizophrenia Digest has just gotten its own home page. I encourage you to check it out, and also to subscribe to the magazine. Its a great source of information on Schizophrenia put out by a team led by William (Bill) MacPhee - a person recovering from schizophrenia (Congratulations Bill!) It includes the feature story from this issue about Positron Emission Tomography PET and photos and graphics are suppose to be coming in near future.


(The following has been forwarded to me by DJ Jaffe of NAMI)

Senator Domenici has attached a provision to a VA appropriations bill that
would require insurers who offer insurance for NBD to not discriminate on
lifetime caps, etc. It is NAMI's position, that this bill should pass.
(Apparently, they do not fear, that the bill would simply cause insurers to
drop NBD from their coverage all together). The bill allows insurers an
'out' if the provision costs too much. I do not know how those costs will be
computed. The provision to provide this limited parity is again, not in the
house version of bill. the house did take a vote to tell their conferees,
that they do want the final version to include this. So NAMI is optimistic.
Following is info that should help you:

TO: States with Conferees on HR 3666

FROM: A Policy and Research Team

DATE: September 13, 1996


Conferees on HR 3666, the FY 1997 Appropriations bill for the Department of
Veterans' Affairs and Housing Urban Development, will probably begin their
work to adjust differences between Senate and House versions on Tuesday,
September 17. The leadership will have influence too. Don't forget them.

Despite the wonderful 392-17 House floor vote last Wednesday instructing
House conferees to accept the Senate amendments on mothers and newborns,
mental illness annual and lifetime limits, and Veterans Affairs care for
spina bifada children of veterans exposed to Agent Orange--conferees could
still further water down or drop completely the mental illness provision.
Such a "motion to instruct" is not binding on the conferees, and we are not
naive enough to expect business and insurance sector opposition to simply
cease without further efforts to gut the Domenici-Wellstone amendment.

However, the overwhelming House vote is there as a matter of record, as is
the Senate's 82-15 vote in favor, and the President's letter to the Speaker
endorsing the three health-related amendments. In the Senate vote, all of
the Senate conferees voted in favor. This is not true of the House vote,
where Subcommittee Chairman Lewis, Rep. Delay, and Rep. Knollenberg voted
against. Rep. Mollohan did not vote.

It is important to keep the amendments together. If mental illness is
separated from the mothers and newborns, it will be more vulnerable. While
there will certainly be a price to pay in political embarrassment if the
conference doesn't agree to the amendment, the business community will try to
convince conferees it is worth it. NAMI members need to convince them

An argument to be made to House conferees:

By accepting Bradley's mothers and newborns 48-hour hospital stay--a specific
benefit, service, and medical specialty--they have broken their prohibition
against mandates. They can no longer make the "no mandates from the federal
level" argument against mental illness provisions with credible consistency.

The cost to the federal Treasury is greatly reduced because the amendment
sunsets in five years.

The cost to employers is minimal (16/100ths of one percent). The amendment
includes a 1% upper limit for business' share of the premium increase, or the
employer is exempt.

For Senate Conferees:

They must simply remain consistent with their vote on the floor. Every
single one voted for it on the Senate version of the bill. How can they
possibly agree to give it up or water it down in conference when all voted
for it on the record?

(The 800# for the Senate and House is 1 800 962 3524 )


Capitol Number Home Number
AK Sen. Ted Stevens (R) 202-224-3004 907-271-5915
AL Sen. Richard Shelby (R) 202-224-5744 205-731-1384
CA Rep. Jerry Lewis (D-40th) 202-225-5861 909-862-6030
CO Sen. Ben Nighthorse Campbell (R) 202-224-5852 719-636-9092
LA Rep. Bob Livingston (R-7th) 202-225-3015 504-589-2753
LA Sen. J. Bennett Johnston (D) 202-224-5824 504-389-0395
MD Sen. Barbara Mikulski (D) 202-224-4654 410-962-4510
MI Rep. Joe Knollenberg (R-11th) 202-225-5802 810-851-1366
MO Sen. Christopher Bond (R) 202-224-5721 816-471-7141
MT Sen. Conrad Burns (R) 202-224-2644 406-252-0550
NE Sen. Bob Kerrey (D) 202-224-6551 402-391-3411
NJ Sen. Frank Lautenberg (D) 202-224-4744 201-645-3030
NJ Rep. Rodney Frelinghuysen (R-11th) 202-225-5034 201-984-0711
NV Rep. Barbara Vucanovich (R-2nd) 202-225-6155 702-784-5003
NY Rep. James Walsh (R-25th) 202-225-3701 315-423-5657
OH Rep. David Hobson (D-7th) 202-225-4324 513-325-0474
OH Rep. Louis Stokes (D-11th) 202-225-7032 216-522-4900
OH Rep. March Kaptur (D-9th) 202-225-4146 419-259-7500
OR Sen. Mark Hatfield (R) 202-224-3753 503-326-3386
TX Rep. Jim Chapmen (D-1st) 202-225-3035 903-885-8682
TX Rep. Tom Delay (R-22nd) 202-225-5951 713-240-3700
UT Sen. Robert Bennett (R) 202-224-5444 801-524-5933
VT Sen. Patrick Leahy (D) 202-224-4242 802-863-2525
WI Rep. Dave Obey (D-7th) 202-225-3365 715-842-5606
WI Rep. Mark Neumann (R-1st) 202-225-3031 608-752-4050
WV Rep. Alan Mollohan (D-1st) 202-225-4172 304-292-3019
WV Sen. Robert Byrd (D) 202-224-3954 304-342-5855


GA Rep. Newt Gingrich (R-6th) Speaker 202-225-4501 404-565-6398
TX Rep. Richard Armey (R) Majority Leader 202-225-7772 214-556-2500


MS Sen. Trent Lott (R) Majority Leader 202-224-6253 601-965-4644
ND Sen. Thomas Daschle (R) Minority Leader 202-224-2321 605-334-9596


This is a special issue of The AMI/FAMI Reporter (in four parts) to help
individuals determine if what is presenting as schizophrenia, depression, or
anxiety disorder is really caused by some other physical illness. It will
also help you evaluate whether someone correctly diagnosed as having an NBD
also has an underlying undiagnosed medical illness.

It is based entirely on information in a paper by Dr. Ron Diamond, who was
kind enough to let us use it. This paper was edited for families by D.J.
Jaffe. This information should not substitute for a consultation with your
doctor. We thank Dr. Diamond and you for your support of AMI/FAMI which
makes this special insert possible.





There is a very real possibility that what seems to be a psychiatric problem
is caused by some physical illness.

How common is this problem? Very...and not very. Most people will not have a
medical disease masquerading as a neurobiological disorder ("NBD", formerly
known as 'mental' illness) . So doctors get sloppy and stop looking for
underlying physical causes. This is especially true if the doctor dislikes
the patient. Yet, these often sicker individuals, are more likely to have an
undiagnosed organic brain syndrome than others.

The medical causes of psychiatric symptoms should always be considered. If
you and your doctor don't look for an underlying physical problem, you won't
find any.

You need to know enough about these medical illnesses and how to look for
them to decide whether a further medical assessment is necessary. In
addition, physical disorders that are significant, but unrelated to the
'mental' disorder are also often missed by doctors so you should look for
those as well.

Be suspicious of "medical clearance".

Just because a doctor says there is no underlying medical problem (i.e., the
patient has "medical clearance"), don't believe it. Physicians are often
uncomfortable around people with NBD and may tend to dismiss the complaints
of psychiatric patients or blame the complaints on the fact that the person
has an NBD. In addition, at times patients may behave in ways that make
evaluation more difficult, either by being unwilling to give a full history,
unable to give an accurate description of symptoms, or too frightened to
allow a full physical examination.

People with schizophrenia get sick, just like other people. The fact that
someone is actively psychotic does not mean that they do not also have a
serious medical illness.

Even in patients who clearly have schizophrenia or some other diagnosable
mental illness and who have had an excellent medical workup in the past, it
is important to consider whether their current complaints or recent change in
behavior could be related to a recent medical illness. In fact, because
psychotic patients are more difficult to evaluate, if they do happen to have
a serious medical illness, it is more likely to get missed.

Following are common assumptions that lead to missed diagnosis by M.D.s:
mistaking symptoms for their causes
listening without fully considering all possibilities equating psychosis
with schizophrenia
relying on a single information source



On pages 4, 5,and 6 you will find a list of diagnosis which could be mimicing
schizophrenia, depression, and anxiety respectively. What follows below is
how a lay person can look for signs of the medical disorders that may mimic
psychiatric disorders, record them, and bring them to doctors attention if
found. The following observations are often possible for a consumer to
determine, or can be done by a family member (even on a completely
uncooperative person). They should be done to help determine if what is being
diagnosed as 'psychosis', is actually another organic disorder masquerading
as psychosis:

The following factors make medical illness more likely:
a person over 40 with no previous psychiatric history
no history of similar symptoms
coexistence of chronic disease
history of head injury
change in headache pattern
a patient who gets worse when given antipsychotic or anxiolytic medications
visual disturbances, either double vision or partial visual loss
speech deficits, either dysarthrias (problems with the mechanical production
of speech sounds) or aphasias (difficulty with word comprehension or word
abnormal autonomic signs (blood pressure, pulse, temperature)
disorientation and/or memory impairment
fluctuating or impaired level of consciousness
abnormal body movements
hallucinations that are visual and vivid in color and change rapidly
olfactory (smell) hallucinations
illusions (misinterpretations of stimuli)
blood or pus in the urine,
high blood pressure
Symptoms of chest pain while at rest,
headaches associated with vomiting
loss of control of urine or stool

You should ask about each of these and try to determine if they are present.
Take specific notes to bring to the doctor.

Look for the following information if you are looking for an underlying
physical ailment.

General appearance: How does the person look? How are they dressed? Do they
appear ill? Is the face symmetrical or asymetrical? Then go to more specific
Skin: Is it very dry or abnormally colored? Extremely pale skin or lips may
suggest anemia. A yellow skin may indicate jaundice and liver disease. Dry
skin and hair may be a sign of hypothyroidism. Look for such things as
dehydration, nutritional status, rashes, edema, petechiae
Eyes: Are they focused? Are the pupils equal? Are they aligned with each
other? Do they move together? Differences in pupil size may indicate brain
masses such as tumors. Wildly dilated pupils may indicate a variety of drugs
including hallucinogens, stimulants, and anticholinergics. Constricted pupils
may indicate opiates. Bulging eyes can be a sign of hyperthyroidism. See if
eyes move equally and fully in all directions. Check for vertical and
horizontal nystagmus: refers to rapid movements of jerking of the eyes, and
can be either up and down (vertical) or back and forth (horizontal). It is
most easily seen if individual is asked to look up or over to the side as far
as possible. Nystagmus is frequently present with drug intoxications, and
vertical nystagmus is never a normal finding in functional psychosis.
Observe body movement to rule out weakness, clumsiness, ataxia, facial
asymmetry, asymmetry of movements, choreiform movements ("worm-like" or other
involuntary movements, usually occurring less than 2 times/second), tremors.
Is there any gait disturbance (a very common finding in a wide range of
medical conditions)? Is there any disturbance in the way they move, hold
themselves,position their body or touch their nose?
Observe neurological abnormalities. Is there motor stereotypy (repetitive
stereotyped movements). Look for aphasias (difficulties with speech). These
can be broken down into word finding difficulties (nominal aphasias);
difficulty understanding speech (receptive aphasias) or difficulty producing
speech (expressive aphasia). Does the person slur words or have excessive
difficulty finding the right words? Do they have any of the following
agnosias (recognition of complex shapes)
apraxias (execution of proper manipulation of objects) perseveration
(inability to switch tasks or mental sets)

Take blood pressure, Is it high or low? Take it preferably lying and
standing (or you can ask the person about any recent blood pressure checks,
or ask them to get their blood pressure taken at one of the blood pressure
machines that seem to be in every bank and drugstore)
Take pulse for evaluation of rate and arrythmias (irregularities of heart

Bring any of these symptoms to your doctors attention and require him/her to
investigate fully.

In addition to specific observances, bring your doctor a comprehensive
overview of the individuals medical history to help determine what may be
causing these symptoms.

In order to decide if a physical disorder exists, and whether or not it could
be affecting the psychiatric disorder, the psychiatrist and doctor must have
comprehensive information. They should get it themselves, but may not have
had time. They may only see a person for 15 minutes, once a month, including
paperwork. Records may have been lost. So you may have to do some for them.
Make sure you bring to the doctor in a useful form all of the following.
Fill in gaps in your information so that important areas are not missed. Use
this as a 'crib sheet' to ask the right questions and make sure your doctor
is following the right leads.

1. Describe the Symptoms- How did they begin? How long has s/he had them?
What has the progression of symptoms been like? Include a careful review of
other "extraneous" symptoms the patient may have-starting at the top with
questions about headache and dizziness and ending at the bottom with
questions about leg sores and trouble walking. This "review of systems" is an
extremely important part of a medical assessment.
2. Describe the History A history of similar problems in the past; past
medical problems including all medical hospitalizations and surgeries; Family
history, both medical and psychiatric. Specifically ask about a history of
epilepsy, emphysema, asthma, diabetes, or thyroid disease and bring these to
the doctors attention.
3. Describe medical status- List all current medical illnesses; all current
medications (Ask specific questions about vitamins, birth control, over the
counter meds, past medical problems, past surgeries, past medical
hospitalizations ; any head injury, coma, periods of unconsciousness,
seizures; the name of person's physician--date of last contact--for what
4. Describe current habits The doctor should have honest info about drug
use, starting with questions about tobacco, caffeine and alcohol and
proceeding on to questions about other drugs x exercise and activity
patterns, sleep patterns.
5. List Medicines: ask about all drugs that a patient is taking, licit and
illicit, prescribed and over the counter. Ask about all illnesses that a
patient has had
asthmatics take combinations of sympathomimetics and xanthines
(aminophylline, theophylline)
patients with allergies may take ephedrine
patients with diabetes may be hypoglycemic from their insulin
thyroid preparations may be prescribed for thyroid illness, following
thyroid surgery (from years ago), or even for weight loss

The goal is not to come up with a specific diagnosis. The goal is to organize
the data that you collect about the person so that you can decide what to do
next, how worried you need to be, and when and how and what to say to your
consulting physician if you decide further medical assessment is necessary.

Here are some of the specific things you want your doctor to do.

The following tests are the most useful screen for picking up physical
disease in psychiatric patients (Sox et. al. (1989), so your doctor should do

T4 (thyroid test, now replaced with a more modern test called sTSH),
CBC (complete blood count),
SGOT (liver function test),
serum albumin,
serum calcium,
vitamin B12

Laboratory and other diagnostic tests should be used to pursue specific parts
of the differential diagnosis list (pages 4, 5, and 6). Diagnostic tests are
much more likely to give useful results when you and the doctor are clear
what question you have in mind and what specific test is needed to answer
that specific question. For example an EEG detects abnormal brain function
while CAT scan detects abnormal anatomy.
If you think a "drug screen" is needed to find out if the person has
recently used an illicit drug, find out if the doctor's laboratory can
measure the drug or drugs that you expect this person might be using, and
whether blood or urine tests are better depending on the particular drug and
time since ingestion. Most labs can test for the presence of cocaine, but LSD
is used in much smaller amounts and may not be detectable even if recently
used. This kind of question can be answered by a call to the chemistry lab of
the local hospital, but such a call requires that you step out of your
typical "non-medical" role and interact with a strange and often forbidding
medical system that probably won't welcome you.

How to work with and actively involve the consulting physician.

At different times with different doctors and different clinical situations
this will mean different things. It always means making the consultation
request as clear as possible. What kind of answer do you want back from the
doctor? What are you most worried about? What information do you already
have? You might think that your job is just to get someone to see the doctor,
and the rest of the job is up to the doctor. This is true-and not true. The
doctor will typically spend less than 15 minutes with the patient to collect
a history, do the physical, order the tests and write a note in the chart.
If the client is less than articulate, important information is likely to
get lost. This is a particular problem with older clients, those who are hard
of hearing or who have other communication problems, or those who are less
organized or less clear in their thinking. It is also a problem when the
symptoms you want evaluated are vague, or your concerns leading to the
referral do not relate to a particular "medical" symptom. Your job must
include organizing the information that you have collected and transmitting
it to the doctor in such a way as to do you or your loved one the most good.

Telling the person to see his local doctor, or phoning the local internist
with a request to "Please do a physical exam on this client." is much less
likely to lead to a reasonable consultation result than a request, "This
client has a depression that seems very atypical. Could you please see if
there could be a medical illness involved?" Or even better yet, "This patient
is complaining of depression with decreased energy level, but he is also
complaining of increased weight, cold intolerance, decreased libido and
extremely dry skin. He was treated for hyperthyroidism 15 years ago. Could
you see if any thyroid problems or any other medical problems might be
potentiating his depression?"
Most of the time you will not be able to frame a consult request with as
much detail as this last example-but in all cases the more the better. Often,
the referral to the physician is based on a pattern suggesting a higher
probability of medical illness, rather than any particular symptom suggesting
a particular illness. For example, anyone who initially develops psychiatric
symptoms over the age of 40 should have a medical workup. If this is the
reason you are referring the client, then the physician needs to have that
Finally, there are differences of communication styles between you and
physicians. You are likely to want to give the physician a complete
description of the patient and the problem in a phone discussion that may go
on for many minutes. The physician is likely to be in the middle of office
hours, with a clinic full of patients waiting to be seen. A brief, succinct
and very focused description and problem statement with a focused
consultation request is likely to be better received by a physician than the
more complete communication often expected between psychotherapists.