Hi, my name is Tiffany. I am a 34-year-old from Staten Island, New York. I am a mother of 3 boys, ages 19, 18, and 9. I worked as housekeeping for the JCC. All that ended 3 years ago when I was driving to work. I noticed I couldn’t switch my leg from the gas to the break, and I was feeling weak and dropping things.
One day, I woke up, and I was so weak that I fell. I couldn’t get up on my own then. I couldn’t chew or swallow or talk. My voice was changing. I also didn’t have any neck control. My eyelids were low. So I made an appointment with my doctor, and he sent me to a neuro doctor. That’s when they sent me for all types of tests, but the tests she was sending me for were to see if I had MS. But of course, that’s not what I had. It took me falling and cracking my head open for her to tell me she couldn’t rule out what I had. So for a whole year, I was fighting myasthenia gravis without knowing and without any medication, until my sister took me to a hospital in the Bronx.
That’s when my life began, on September 4, 2013. I met my doctor. His name is Dr. Volkan Granit, and he was the one that told me he believed that I had myasthenia gravis. Myasthenia has changed mine and my children’s lives completely. I’ve have gotten treatment as far as IVIG. I was getting that once a month for 3 days. Now it’s at the point where it doesn’t work. I also have gotten plasma that will work but only last 2 weeks, and then I’m weak again.
On October 3, 2014, one year later, I ended up on a breathing tube. I was very weak, and I couldn’t breathe on my own. I was on the breathing tube for 13 days. I had gotten plasma done at that time, and I was feeling good when I came home for 3 months. After that 3rd month, I was feeling weak again. I could hardly walk. My bedroom is upstairs, and my kitchen and living room are downstairs. When I’m weak, I go down on my butt, and when I’m ready to go to my bedroom, my sons carry me up the stairs.
It’s been very hard for me this past year. I’ve been in and out of the hospital. I’ve found myself getting admitted at least once a month. In this past year, I’ve gotten worse, to where none of the infusions have worked. I’ve been in a wheelchair. I’ve been having trouble standing, walking, and even lying down. I spend most of my time at home because I am so weak that I don’t even want to be outside, plus I can’t dress myself, so I just stay home.
On October 26, 2015, I went and had plasma, and it lasted for 2 weeks. I also had IVIG at home on November 16, 17, and 18, and still nothing. So Dr. Granit set up an appointment to meet a surgeon doctor by the name Kessler. I met him on November 24, 2015. Dr. Granit and I told him my story about my myasthenia and how uncontrollable it has been. They asked me if I would like to have the thymectomy surgery done. I am willing to get this surgery on December 10, 2015. That is 2 weeks from today. I have faith.
I want to say Happy Thanksgiving to all family and friends. Myasthenia family, stay strong, have faith. The cure is to come. God bless to all. On my way to a new beginning and a fast recovery. Thank you.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
oh my, I pray for you and your health! I am truly sorry that you are going through hell. I would like to thank your sister for her loving support to/for you , how wonderful to hear your sons help you out and carry you up to your room, I thank them ! I thank the Doctors who have treated you with patience, understanding and kindness !
…. Mostly, I, “THANK YOU “, here is my list of thanks to you…
… your story will be read by alot of friends that you will accumulate in this new club that you courageously wrote in and shared with us all your personal life , it is well written it has compassion , love for life , strength , courage and the will to FIGHT, the NEED FOR KNOWLEDGE of this new personal journey of yours, the NEED TO UNDERSTAND the why me questions ahead ! Your story will bring courage to others to advance and go forward in your new journey !
Please, dont loose hope, keep that positiveness and pretty smile and most important, remember… TIFFANY, YOU MIGHT HAVE ” Myasthenia” IT CERTAINLY DOES NOT HAVE YOU !
Stay in control , be cool and keep writing we need more HEROES like you ♡ ♥! !
Keep me posted and GOOD LUCK ON DECEMBER 10 , I will be praying for you♡♡♡
With love from Québec, Canada
Brigitte Estelle xxx