Hello to all friends of this community.
On Thursday morning, my family and I will depart Seattle for Atlanta for the FND conference starting Friday at Emory University.
As many of you know, I have been collecting questions from this community to hopefully make available to conference attendees. All questions will be submitted in writing anonymously on white paper. I hope that people will be allowed to pick up these questions and see some of what is on our minds regarding FND.
I will gladly bring back any responses, written or oral, and post any information I get back on this site. I really have no idea about doing this, but the optimist in me says to try and see if the medical world is serious about addressing our concerns.
A Game of Twenty Questions:
Actually, I have twenty-one so far and it is no game. I would love to have more if you have them, but need them by Wednesday noon Seattle time so I can get them on paper and copies made. After that time, post them anyway and I will at least try to ask them verbally.
Not a Game at All...
This is very serious for all of us. It is emotional for our family as I have struggled for over two decades with symptoms, one daughter has had this for over eight years and my wife has borne the brunt of this as caregiver. We have been ridiculed, ignored, disregarded and failed by medicine. I am fed up.
Questions so far:
Not in any particular order. All of equal importance. Annotated to save time and space. Critique and add to!
1. How do I keep from getting worse?
2. Any attempt being made to categorize types of FND?
(Four sub questions included in this one)
3. Any diagnostic tools (MRI) for making positive diagnosis?
4. Any specific treatments other than CBT and physio?
5. Why are we left without care to worry about "unknown?"
6. Any evidence of genetic predisposition / linkage?
7. Why no continuity in diagnosis, treatment or cause?
8. Any doctors of family member of doctors with FND?
9. If in my head, why was I not cured when told that?
10. Will I ever get my life back?
11. Is the name FND the reason I get no help / treatment?
12. Is there anyone who knows more about FND than I do?
13. Will anyone listen instead of treating us like psych case?
14. What to do when have both FND and organic disease?
15. Why doesn't Neurology have protocols for FND?
16. If anti-seizure meds help, why not find out why?
17. Is it acceptable to be told to "Google" to find doctor?
18. How on earth do I reassure my family about FND?
19. Why is there not a better name for this disorder?
20. Is Neurologic Deficit Disorder a possible better name?
21. Is Abnormal Physiologic Disorder a better name?
Again, much more detail provided in many of above.
Thanks again for contributing. You are a great big reason for us going. Way too much suffering and lack of care happening.
We do what we can and report back. Not real optimistic but hoping for a positive surprise. If nothing else, I just want to find one provider or one researcher and tell them I think the lack of progress, inadequate care anb insensitivity to patient family needs