No if you are lucky you get a diagnosis and are told to download an app and the neurologist doesnt want to see you again, no treatment just "self help"
Thank you to you all. I’ve had FND for almost 15 years and I can say that seeing the changes being made and lobbying for still more is wonderful to see. 👍🏻
This video doesn’t make my legs hurt less. How about you tell us about the latest advancements in treatment? How about you give us ANYTHING to be hopeful about?
FND Hope has refused to allow me to join their adult support groups. They are a shameful, base group. I have literally tried to get them to let me join their support groups for FIVE YEARS. And after five years I finally heard back from someone. Guess what he did? Refused to let me join. This group is a sham, a fraud, and they do NOT care. FND HOPELESS
FND Hopeless. I’ve been trying to join your online support groups for the past 5 years, or thereabouts, and never once have I received an email regarding the meeting or how to join. Worse, I have tried to contact you but no response for yearssss. You have some nerve telling people to be hopeful when clearly nothing is happening and people can’t even access the programs you claim to offer. It’s a charade and a cruel one at that. For shame
Nice to see someone who is getting treatment and can recover. Unfortunately that is not the same for all people affected by FND
No if you are lucky you get a diagnosis and are told to download an app and the neurologist doesnt want to see you again, no treatment just "self help"
@@wildforms I agree it took years for me to get a diagnosis and now I'm severely disabled and everybody suffers differently when not all the same
@@cherylbetts7379 sorry to hear that, its so unfair that sufferers are not getting the support they need
I hope we get more support but while waiting for 2 years to do 5 weeks sessions, I am using the FND app to help me understand it all
hello! I was just diagnosed but received no guidance just told to set an appointment with a psychiatrist. what's the app called ? @@avawright4080
Thank you to you all. I’ve had FND for almost 15 years and I can say that seeing the changes being made and lobbying for still more is wonderful to see. 👍🏻
Are there any links to Lyme disease and FND?
Thanks 🙏
This video doesn’t make my legs hurt less. How about you tell us about the latest advancements in treatment? How about you give us ANYTHING to be hopeful about?
The NHS Neurologist who was treating my daughter (before we paid for a private diagnosis) sent her home from hospital with Vit D supplements 😢
FND Hope has refused to allow me to join their adult support groups. They are a shameful, base group. I have literally tried to get them to let me join their support groups for FIVE YEARS. And after five years I finally heard back from someone. Guess what he did? Refused to let me join. This group is a sham, a fraud, and they do NOT care. FND HOPELESS
FND Hopeless. I’ve been trying to join your online support groups for the past 5 years, or thereabouts, and never once have I received an email regarding the meeting or how to join. Worse, I have tried to contact you but no response for yearssss. You have some nerve telling people to be hopeful when clearly nothing is happening and people can’t even access the programs you claim to offer. It’s a charade and a cruel one at that. For shame