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.
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.
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.
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.
”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.”
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.
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
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” 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.