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What were your experiences with MRI scans like?
Have you ever had an MRI?
MRI machines can be very loud and claustrophobic. My last MRI was done at the Children’s Hospital of Orange County. I didn’t need any anesthetic to keep me still but the technician put on some goggles that played a movie. I was entertained during the exam. I also wore a pair of headphones the allowed me to hear the technician.
Has a technician ever allowed you to watch a movie or listen to music during the examination? Have you ever had a cage placed over your head? Do MRI make you uncomfortable?
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4 Replies
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I’ve had numerous MRIs. The last one in January was in Belgium for a study I’m participating in. It was a full body MRI, and unlike some of the more open air machines I’ve had here this one was a very tight tube. I’m usually not too claustrophobic but thought I’d be better not opening my eyes in this one. I just stayed calm, with eyes closed, and meditated. Almost fell asleep! I’ll have to go back to Belgium in 2020 and 2021 for more.
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Dani, yes this is an interesting study focused on LGMD2L. I had the full body MRI and other testing and three needle biopsies of thigh muscles at different levels of atrophy. They are looking for why some muscles are minimally affected in 2L and others much more deeply affected. And as I mentioned, there will be follow up visits each of the best two years. This first trip in January 2019 I was able to see various cities in Belgium – Brussels, Antwerp, Leuven. It was January so colder and rainy. Next year I’m planning April and hope to get up to Amsterdam and down to Paris. I want to see the Van Gogh museum. 🙂
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It is so generous to take time out of your life to participate in this study. I’m sure it will help many people with LGMD and help scientists understand the disease on a deeper level. Plus, who wouldn’t turn down the opportunity to travel to Europe. Do they pay for your plan ticket and hotel too?
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Leah, we did get a stipend of €190 But otherwise, I did pay. Going in January I was able to find round-trip airfare from Chicago for $580 and I stayed with a family of a person that has LGMD2L While in Brussels. But he is young and really still not having symptoms. They were able to put me up downstairs. But it was very difficult with the wet and rainy weather and trying to even get into the house He was great and put down some bricks to build me a couple steps. Since I am going in April in 2020 I think my airfare will probably be more expensive but I will enjoy the weather and hopefully get into a couple of other countries Right now I have muscle cells in Denver and Chicago and Atlanta and Belgium. I am hoping that a new study and France will also get some cells. I guess I am leaving a part of me all over the world!
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