Calvin and I wrote and published the book living with Periodic Paralysis: The Mystery Unraveled, last year. I have written much about, but recently a member of our Periodic Paralysis Network Support, Education and Advocacy Group, Tammy Collins-Levi, wrote a wonderful review on Amazon.com after purchasing it and reading it. She discussed how it changed her life. We have decided, with her permission, to share it with you today.
Thank you so much Tammy for writing this and allowing us to share it with everyone!!
If you or someone you love is fighting the uphill battle of getting a diagnosis, this book is for you. I had been sick for years. I became seriously ill 4 years ago. So many opinions with out any educated knowledge followed. I cannot begin to tell how much was lost during the past years of having a rare illness. But Susan speaks my story perfectly. I had already been to Orlando to meet with many others that suffer from Periodic Paralysis and had my genetic DNA sent to Germany. It seemed like all the doctors kept putting me off with waiting on my results from Germany. As some of you might know this can take years and with my heart problems it could of cost me my life. I am 38, happily married, and a mom of four. This rare condition almost took my life many times. I was left drained and with brain fog that was hard to see through. I was searching for answers and others who had been told this is not real!
I bought Susan and Calvin’s book and was shocked that other people have suffered so badly. I was overjoyed to find someone that had taken time to tell the story with hopes of helping others heal! I realized it was time I pull it together and go through my records. I pulled all the facts. That is what matters to any other doctor and makes them stop in their tracks. I pulled all the labs, test, EKGs, EMGs, and left the doctors opinions in the dust where they belong!! “Hit them with the facts” Susan you hit that one right on the head. I had heard this from others, but with no true advice about how to do this. You guys walked me through it step by step. The organized thought process to getting through all the red tape and nailing down what is being missed is the best I have come across. And I am a fighter for what was lost. I have done countless hours of research and spent a ton of money traveling around the country to figure out what stole my health. This book is the best I have found to address it all.
I meet with my geneticist on June 15th and she took all my organized medical facts and gave me a 100% clinical diagnosis of ATS. She informed me my labs showed electrical heart dysfunction and I am scheduled to have a pacemaker and defibrillator in a few weeks. If I had given up she said I would of probably passed from sudden arrhythmic death syndrome. How sad that would of been for my big family that has fought right beside me to find answers.
To sum it up this book helped organize my foggy mind, lifted my spirits, and give me the drive to fight like Susan did to get a real diagnosis before it was too late. This book saved my life and opened up new doors to my future. My life is different, but at least I know what I am fighting now. That was a priceless gift that this book gave my family and I.
Read this book and follow the advice offered and it will lead you in the right direction. Because you have all been on a never ending roller coaster ride and it is time to get off. It is time to walk up to your fears and say it’s time to get this right this time. No more games. Your life is important! Remember it is your body that is failing and only you know how that feels. Don’t settle for a diagnosis that doesn’t fit or make sense.
Thanks Again Susan for standing up for us all!!!!!