Connect
← Return to Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus
Discussion
Lance-Adams Syndrome aka Chronic Post Hypoxic Myoclonus
Brain & Nervous System | Last Active: May 8 12:56pm | Replies (17)Comment receiving replies
Hi I’m in South Carolina with the same diagnosis. You right it is hard to control. Three months later after 30 days in ICU I started falling. Imagine a tree falling straight. I had no muscle control. Head first to the floor after first step. The medicine that stopped me from falling was the Valproic Acid thanks to the Mayo Clinic. I was told it’s complicated but the only way to control the jerks from around people anxiety was to get the exact dose of medication for each 4 that I take to be comfortable. Still trying to get it right. I just keep praying for the Doctors and safety for me because I also have neuropathy. Using walker waiting for wheelchair. Hang in there she’s still here.
Replies to "Hi I’m in South Carolina with the same diagnosis. You right it is hard to control...."
Welcome @eadwar and @amandajbla, I'm happy to see that you have connected with @angelasanders, @nadinehunger and others. I thought I would share the Lance-Adams Syndrome Facebook group link mentioned by @angelasanders as a resource for more information and support - https://www.facebook.com/groups/1487478998135615.
Thanks to each of you for sharing your experience and resources to help others with this rare condition.
Connect
Thank you for your reply. If you haven’t already please join the Facebook group for Lance adams syndrome. The community is growing and the group is very supportive. It’s for patients and family/caregivers.
When my daughter falls I describe it like a fainting goat, she almost gets stiff, there is no bend in her legs/arms, she can’t really catch herself at all. She has had several significant falls resulting in injury to her face/mouth/teeth.
I hope soon you will get your meds dialed into perfection! These meds are just so tricky and different for everyone.