Hello All,
I had a great day yesterday. I was recovered enough to run errands and grocery shop with Calvin. We had a great time and when we got home and I did well except for some weakness and dizziness in the evening. I was very excited when a package was delivered in the afternoon. It was my first copy of my second book, which I actually wrote many years ago, but finally was able to publish it in paperback. It is about my daughter Sandy, who was born with Sotos Syndrome. She passed away at the age of 5. Her life and death touched me in many ways and prepared me for living with my own disabilities. It was a wonderful early Christmas gift.
Finding a Doctor Who Cares
“NOT AN EASY TASK BUT POSSIBLE”
So many people with all
forms of Periodic Paralysis struggle with locating doctors who can and will
help them with both a diagnosis and proper treatment. They go from doctor to
doctor and disappointment after disappointment, misdiagnosis after misdiagnosis
and mistreatment after mistreatment. This can go on for years with the
misinformation following them from physician to specialist. Often, this will
lead to a diagnosis of hypochondria, malingering or the archaic “conversion
disorder” and a referral to a psychiatrist. Many of the patients become
depressed and begin to doubt themselves after being prescribed medications for
mental disorders that invariably make the symptoms worse or different, thus
creating the need for yet another referral to yet another specialist.
This vicious cycle can continue for years as the symptoms worsen and the
patient becomes more disabled and debilitated. Family and friends tire of
dealing with the situation and many friends are lost, marriages end in divorce
and family members withdraw their support. The patient is left in more pain and
despair and the humiliation can be unbearable. Many are never diagnosed and
never receive the treatment they need and deserve.
I myself saw 30 different physicians in 6 years before I was diagnosed at the
age of 62 after a lifetime of illness, disability and loss of friends, family
and a marriage. For the most part they were rude and did not understand what
was happening to me. Most of them were frustrated and believed it to be all in
my head.
At one time, I was trying to
find a new doctor because my previous doctor moved out of town suddenly. The
new doctor I chose told me on my first and only visit, "You are too sick,
I will not take you as a new patient". I started crying and cried all the
way to the insurance office. I reported him and was told that he did not have
the right to do that. They called it "cherry picking", but they did refer me to another doctor.
After
my diagnosis I have seen twelve more doctors, all of who do not know how to
help me, including one who is a specialist in Andersen-Tawil Syndrome. I have
been in contact with a physiologist who studies ion channelopathies who would
like to help me and my family but is not sure how. I have spoken with one of
the neurologists who misdiagnosed me, who has now apologizes for missing some
important findings in my labs and the opportunity to diagnose me two years
earlier.
I also was able to finally locate a few doctors who have been willing to work
with me (two more left town after seeing them for a short while) and have read
the information I provided for them about Periodic Paralysis and done some
research on their own. They do not deal directly with my PP symptoms, however,
but with the things they know about, such as, diabetes, oxygen therapy and
referrals to specialists as I need them.
After all of my
experiences with finding doctors who will work with me, I have devised a common
sense plan that can assist anyone to locate a doctor (Primary Care Physician: PCP)
who will be willing to work with them before they ever step into the
physician’s office. There will be no more insults from a person who should be
showing compassion and no more leaving the office in tears and despair.
1. The most obvious place to begin your search, if you have a good doctor who
has decided to move on in his or her career, is to ask your present doctor for
the name of a physician who knows about periodic paralysis or who would be
willing to work with you. If he or she gives you a referral, be sure to have
them confer with the new doctor about your disease and provide him with as much
information as possible before your first visit. You may also want to provide
information of your own ahead of time.
2. If you are not that
lucky, the next thing you can do if you have insurance, is to call your
insurance company and request a “patient advocate” or “case manager”. Most insurance companies have employees
whose job is to help their clients who have “more than the average” or “out of
the ordinary” medical needs.
”A patient advocate is someone who works on behalf of
patients and their families during stays in the hospital or other medical
situations. Many different organizations employ on-site advocates to deal with
the daily needs of patients… The patient
advocate's primary function is to
serve the patient's needs, along with the needs of their family.”
Once
an advocate is assigned to you, you will need to explain your situation and
Periodic Paralysis and explain your need to find a doctor who knows about the
disease or who will be willing to work with you. It would be wise to seek out
neurologists, internal medicine doctors and endocrinologists. You may need to
see more than one doctor before you find the “right” one for you.
3.
If your insurance company does not have patient advocates and has a restrictive
list of particular doctors and specialists covered in their program, again, you
will need to explain your situation and Periodic Paralysis and explain your
need to find a doctor who knows about the disease or who will be willing to
work with you. They will sometimes do the work for you.
If
not, you can go through the lists of neurologists, internal medicine doctors
and
endocrinologists
and call each office and ask for the office manager. You will need to explain
your situation and Periodic Paralysis and explain your need to find a doctor
who knows about the disease or who will be willing to work with you. In most
cases, the office managers will speak to the doctor or doctors about your case
and get back with you if the doctor is willing to see you.
4. If your insurance is not restrictive, you will have to check your local
phone book or the web for neurologists, internal medicine doctors and
endocrinologists in your area and proceed with the phone calling until you find
one who will work with you.
Another
good option, if your insurance is not restrictive and requires no referrals, is
to check out the clinics in your area. The one I attend has 85 doctors and are
connected to a local hospital. There should be at least one doctor willing to
work with you.
You
can proceed as explained previously; call and speak with one of their
representatives. Explain your situation. The representative will go through the
list of their physicians and chose a few that may work for you. The doctors
will be consulted and one or two may agree to see you. It may be wise to spend
time with each to decide the “best fit” for you.
5.
Without insurance, seeking out help from your local health department can be
productive. Also your local services for disabled will have some possible
options for finding a local doctor. You may be able to secure a social worker.
He or she may do the work for or with you.
6.
Thinking “outside of the box” can bring some surprises. I was so frustrated and
about to give up on ever finding a local doctor who could diagnose and treat
me, when I had a wild idea.
One
of our local television stations offers a wonderful service every Tuesday
evening during their two-hour news coverage. A local physician, and a guest
specialist of her choosing, take calls from viewers and answer medical
questions.
I
called and asked if she knew about Periodic Paralysis. I was shocked when she
told me she had a patient who had it and that the patient saw a local
neurologist who treated her. She gave me the name of the neurologist. I made an
appointment and after two visits was diagnosed! (I must explain that I had all
of my medical records in hand with years of medical testing ruling everything
else out and a referral from my nurse practitioner.)
7.
The next option I offer must be used with caution. You may search the web for
specialists. Seeking out these specialists in the field of Periodic Paralysis
or Andersen-Tawil Syndrome, may lead you to some severe disappointment. There
are several across the United States and a few around the world. Many do not
see patients and are involved in research only.
The
specialists will only diagnose based on genetics or a very “pure” form of the
disease. (This may be based on the fact that most of them are researchers and
their funding is based on working with only those who are genetically
diagnosed. This leaves out a high percentage of us.) Their view can be
extremely narrow and I have been surprised that their knowledge of the disease
can be severely lacking in some areas. Their only option for treatment is
limited to medications that do not work for many of us. If you have other
conditions co-existing with your Periodic Paralysis or do not have a known
genetic code, you will be sent packing in tears and humiliation. It is not worth
the time or money you may spend to travel to another state or country.
Recently,
I know of several individuals who had symptoms of Periodic Paralysis. They went
to great expense to travel to the “specialists” only to be told that they
absolutely did not have Periodic Paralysis. Within a few months, genetic
testing proved that they did indeed have variants of Periodic Paralysis.
8. The Muscular Dystrophy Association (MDA) is an organization that treats
patients with muscle diseases, and lists all the forms of periodic paralysis
under that umbrella. In order to see their doctors you must already have a
diagnosis or be referred for a diagnosis by a doctor. However, most of the
doctors we have information about at the MDA Clinics, do not know about Periodic
Paralysis or Andersen-Tawil Syndrome. Most offices around the country do not
know about Periodic Paralysis. If you call for a referral or information, you
will probably be told that they do not know what you are talking about. I have
had to call many MDA offices around the country for patients to tell them that
they do indeed treat Periodic Paralysis and Andersen-Tawil Syndrome patients. I
refer them to this information at their own website: http://www.mda.org/disease
Also,
although you may already have a diagnosis, you must see their doctors and be
re-diagnosed before you will receive any treatment or benefits offered. If the
MDA doctor does not agree with your previous doctors due to their lack of
knowledge of the disease or their narrow view based on old facts and research,
you may lose your diagnosis. It is not worth the chance. That being said, there
are some very good MDA doctors and some of our friends with Periodic Paralysis
are having some success with the ones they are seeing.
Conclusion:
Many
of the people with genetic codes that have been located do have good doctors
and receive good treatment and proper medication for their particular forms of
Periodic Paralysis. They are very lucky. The medications help them and they can
lead nearly normal lives as well.
I
understand, however, it is difficult to find a doctor who will work with those
of us who suffer from the effects of Periodic Paralysis, if we have not yet
been diagnosed or those of us with variants for which no genetic code has been
discovered yet, even if we have been diagnosed clinically (based on symptoms)
or for those of us who have other diseases which co-exist with our form of PP.
The truth is, very few of us will get any real help from a doctor even if we
find one who knows about the disease and is kind, sympathetic and empathetic.
This is due to the fact that most of us are unable to tolerate the known
medications and the doctors do not know how to help us.
So, although I have a Primary Care
Physician and several good specialists, Calvin and I are still left to deal
with my episodes of paralysis and my other symptoms with no real help from the
medical field. They do not know how to help me, but treat me well and look
after the things they can; like my heart problems, power wheelchair, oxygen,
diabetes strips, labs, etc. I appreciate and understand their lack of knowledge
of such a rare and baffling disease. They trust us with the plan we have
created after much research and trial and error.
We have created a website and a forum with several support and discussion
groups and this blog and we have written a book “Living With Periodic Paralysis:
The Mystery Unraveled” (11/28/2017...and now three more books) to pass along this information and hope to help others
in a way the doctors are unable to at this time.
I “walk the tightrope” daily to avoid episodes and the serious symptoms they
create. This plan is outlined on our
website and in our book and is discussed on our support and education
group.
Until later...
