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Family introduction
Hi everyone. My name is Lori Dunham and our fourteen year old daughter Grace was diagnosed with LEMS August of this year. We currently live in Florida. Last March our daughter was playing basketball and by May she could hardly walk, lost over 12 pounds, slurred speech, gagging issues, etc. Once she was diagnosed correctly, we have seen great improvement with her first with mestinon and ruzurgi but IVIG has made a life changing difference for her. I would love to connect with other parents of children with LEMS. I understand how overwhelming it is. I finally feel like we are coming out of a fog and she her personality coming back to life!!
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1 Reply
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Hi Lori! Thanks for introducing your family! I’m so happy to hear that the combination of Ruzurgi, Mestinon and now the addition of IVIG is really helping your daughter. I found the same thing. I was on 3,4-DAP (now called Ruzugi) and Mestinon when my LEMS kept progressing. The antibodies still needed to be stopped. Ruzurgi increases the amount of acetylcholine releaesed and mestinon slows down how fast the body processes it; but those two alone do not stop what’s causing LEMS- those pesky P/Q and sometimes N-Type Calcium Channel Antibodies! Many patients find they need to add immunomodulation (IVIG or plasmapheresis) or immunosuppression to slow down the antibody attack. I’m so glad to hear your daughter’s personality is coming back! The change my friends and family witnessed when I started IVIG was amazing. I call my treatment a 3-pronged approach.
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Hi Lori,
My daughter Emma was diagnosed with LEMS ten years ago. She was 12 years old at the time. In August 2010 she was cycling easily 20 kms and in October of that same year she couldn’t walk anymore. With 3,4 DAP and Mestinon she got better, but for outdoor transfers, she is in a wheelchair. Unfortunately IVIG didn’t work that well for her…
The last 10 years have been a journey with ups and downs and one of looking for answers everywhere. And it still is because LEMS itself is also an “up and down” story, sometimes with good moments and sometimes with (very) bad moments. Today my daughter is quite stable when it comes to muscle weakness, but she is suffering a lot from chronic pains (severe stomach issues, joint pains and headaches) mostly due to the side effects of her medication (and she is taking a lot).
At this moment I am putting a lot of research into the use of CBD. I am looking for a neurologist who is willing to subscribe it because it is illegal in Belgium (I forgot to mention that we live in Belgium, that small country in the heart of Europe ;). We have to go abroad to actually get the CBD. It is very complex, but I heard great stories about it and (hopefully) I will be able to start CBD in the very near future.
Here’s an interesting informative video about cannabis and how it works for epilepsy, chronic pain, cancer, parkinson etc…:
https://www.youtube.com/watch?v=1C6sRkah0mQ
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