Hi Chris,
Your stories are so riveting yet so tragic!! I’m so sorry you suffered thru so much pain for so long…that’s terrible but remarkable strength you have! Sorry you have so much nausea too 🙁 I am grateful you can relate tho, please find encouragement in that your struggles are helping others to find peace in their own. Aww that’s so neat about your friend, Karen!! 🙂 what a special treasure she must be…I’m in awe, such blessings.
I have a friend who uses cannabis and has recommended to me to try, but how to know which one? Does it help you a lot? What helps you to sleep? Any daily functioning tips or tricks you could share? I am glad to be ambidextrous so I can switch between hands when one bothers me more than the other.
My neurologist appointment this morning was decent. Bloodwork was all good. He said all 3 biopsies came back positive and 2/3 showed absence of sweat glands (?). He said next step is to determine the cause, but symptoms and damage may be permanent. He sent off saliva for genetic testing and said pending those results would determine next tests. He said to increase gabapentin in the meantime. My main frustration is being able to work, do daily tasks, stay active and enjoy life again. I try not to let my pride get in the way bc I have to remember I can no longer function at normal par…

Thanks for listening,
Karen