Veerle Van der Eecken
Forum Replies Created
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Hi Dawn,
Just to let you know that I received a strange email today through Lambert Eaton News Forums.
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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