"Why Do You Need A Diagnosis?"

                                                PPN Publishing
Hello All,

After reading a post from one of the members of our PPN Support, Education and Advocacy  Group, I felt it was time to get back on my soapbox and do a little editorializing again. It seems that doctors in general have learned little about Periodic Paralysis and even less about how to deal with chronically ill patients. They lack what is called "a good bedside manner." I wanted to take some time to put a doctor in his place and perhaps teach him a thing or two also.

Because we are an advocacy group, as well as educational and supportive, I find I must advocate for our members safety, and well being. Therefore, I wrote the following:                                       
                                           
                                                "Why Do You Need A Diagnosis?"

One of our members was at another frustrating appointment with a “specialist” attempting to get a diagnosis and proper treatment for her teenage daughter who has been suffering greatly during severe and painful episodes of paralysis several times a day and at night. The “specialist” in the process of being rude and arrogant, dared to ask the following question,  "Why do you need a diagnosis?” and then made the statement “There is no treatment," not really expecting an answer or reply.  Distressed and dismayed at yet another doctor’s demeaning, dismissive and egotistical attitude and no diagnosis for her ill and suffering daughter, our member related the story to us on our PPN Support and Education Group.

In answer to the doctor’s rhetorical question and ill-informed and unfortunate comment, Calvin responded with the following: "Why do you need a diagnosis?" Answer...”To stop the insanity and abuse they create by mistreating the condition. This phrase should be included as one of the triggers we use to find another doctor.”

He is absolutely correct. The problem is individuals with Periodic Paralysis need a diagnosis. We need it for safety reasons in the doctors’ office, the dentist office, an ambulance ride, the ER, the hospital, for surgeries and in any emergency. Most of us cannot take any drugs or medications due to idiosyncratic, paradoxical and iatrogenic effects nor can we have IV’s because sodium and glucose can shift our potassium even lower and causes other life-threatening symptoms nor can we tolerate anesthesia due to possible malignant hyperthermia and/or more life-threatening arrhythmia, paralysis, possible cessation of breathing and death. We need a diagnosis so we can be safe and free from harm in any and all situations.

The medical professionals in our lives need to know that we have Periodic Paralysis and how to treat us or not treat us, as the case may be. They need to know that when we are in paralysis and struggling with arrhythmia, fluctuating blood pressure and heart rate, chocking, breathing issues and pain, that although we cannot open our eyes or speak, we can hear them. They need to know that we are not faking. We are not making it up. Why would we??? Does anyone really think we want to be totally helpless and struggling for our life????

We also need a diagnosis to stop the constant, expensive and insane cycle of testing and retesting for every condition under the sun for an average of twenty years out of our life. (Some of our members did not get a diagnosis until they were in their eighth decade. I myself was diagnosed at the age of 62.) Because genetic testing is costly, narrow, biased and can only diagnose about half of all patients, diagnosing must be done clinically, based on symptoms, once “everything else is ruled out.” REALLY?? How many medical conditions exist in which an individual intermittently has episodes of paralysis??

During the cycle of insanity for a diagnosis, drugs of every type are prescribed which are unnecessary and harmful causing more damage and possible death. New symptoms may develop and then more testing is done and new drugs prescribed. The insanity continues. Then comes the diagnosis of “conversion disorder” or “somatic symptoms”.  Psychotropic drugs are prescribed at this point. More damage is done and possible death may occur.

Without a diagnosis and proper treatment, the individual naturally becomes more ill because organs in the body are being damaged from the potassium shifting, exercise intolerance and gradual permanent muscle weakness sets in, heart problems get more severe, breathing muscles become affected, osteoporosis, kidney stones develop. Metabolic acidosis can kill us. Adaptive equipment like power wheelchairs and oxygen may be necessary. Without a diagnosis the patients will be unable to receive these much needed aides. Without a diagnosis, disability or social security is impossible to receive.

The child, teenager and young adult with Periodic Paralysis will need a diagnosis for appropriate treatment. He or she will need accommodations in school. Teachers and school nurses need to know how to deal with the symptoms and paralysis and understand what is happening and why. There may be a great deal of school missed. Sports and other activities need to be avoided. A special diet must be followed. Wheelchairs or other adaptive equipment may be needed. Without a diagnosis none of this will happen.

For the adult trying to support a family by holding down a job or a career and living with Periodic Paralysis without a diagnosis and proper treatment may lose their job. The years and years of medical testing, misdiagnosis, wrong medications, inappropriate treatment and more can result in financial ruin. This can lead to homes being lost, divorce may ensue, families will fall apart, friends back away, depression sets in and possible suicide may occur. A clear diagnosis and treatment may help others like employers, family members and friends to understand and be willing to help. Disability may be possible.

One of the most important results of a diagnosis for the individual with Periodic Paralysis and his or her family is validation. Validation that the illness does truly exist and that he or she is finally believed. They are vindicated. Vindicated of making it up, faking it or being a hypochondriac. They do not have “conversion disorder.” They have been telling the truth.

And so doctor, “Why do we need a diagnosis?” We need a diagnosis because we want a chance at the quality of life you are experiencing. We need a diagnosis because we want to be treated with dignity and respect. We need a diagnosis because we want to be free of or ease our paralysis, arrhythmia, heart issues, breathing issues and more with the possibility of proper treatment or medication. We need a diagnosis because we would like to use our family's hard earned money to take care of our needs rather than paying for unnecessary testing and harmful drugs. We need a diagnosis so we can obtain adaptive equipment to make our lives and that of or loved ones easier.  We need a diagnosis so we can be safe in emergency situations. We need a diagnosis because we want to live!!!

In conclusion, your rhetorical question and following comment indicate you lack any understanding of the ill patients who come to you for help. You obviously lack understanding, caring, compassion, empathy and sympathy. Your knowledge of Periodic Paralysis is obviously limited and based on archaic information because there is a great deal that can be done to treat our symptoms, once we have a diagnosis. You are obviously not living up to the Hippocratic Oath that I assume you pledged early in your career. You are not doing the job for which you we hired. And you sir are now fired!!!

Until later...