Need a new name for FND

[Ronwyn]

Campaign for a better name

I think it's time FND is renamed , I believe we shouldn't be charictorised as mental illness . Why is it we all seem to have simalar symptoms , why does our speech come out sounding the same , why do we all get fatigued, why does our left side have worse pain and weakness.

I think it's time we all stand up together and shake my the medical researchers to do better research on us , we need to be monitored with brainwave electircal night and day whilst in a relapse to see how our brain run to check the electrical pulses in the brain..

I've had enough of being sick and no help and def have not gotten better only worse.

If it is in my head WHY wasn't I CURED as soon as the neurologist said it was all in my head sorry that's not good enough for me anymore.

I'm going to do all I can to try to prove we are realy sick and WE all need help

[Ailsaw]

I know exactly where you are coming from and after six months of hell I have received no help apart from painkillers and anti depressants. It really is shocking how little is known about this condition and I have paid £295 for private neurologist to be told fnd with no tests carried out at all. I feel so confused and I don't get how such physical symptoms can be all in the mind. It's a long lonely battle and I wonder if I will ever get my life back!

[cgarff]

Ronwyn, I once heard I believe on this site the most awesome definition or new name for FND.. And I truly believe it fits. FND stands for: Frankly No Diagnosis!!! I can say that if doctors go through the things we do, there might be more studies done! No one wants to go through this Hell, and No, I don't believe it is all psychological.

There have been some studies done lately that are finding differences in the TPJ or the Temporo Parietal Junction.. forgive me if that is spelled wrong. Please look up functionalmovementdiorders.com in the search box, put in TPJ or Maurer, and you will find information from a Dr. Karine Maurer at NIH the National Institute of Health in Bethesda MD in the US. She is indicating that they found some differences in the brain of FND patients vs healthy patients. It is a very interesting article, and a good site to see as well. I wish you luck, and I completely agree, This is not all in our head, or is it? The TPJ is part of the brain that is being effected, or that they are seeing the difference in. Please read the article.

[FairyfeetX]

Have you got an alternative name to suggest? I saw the senior doctor in my practice and said I have a diagnosis of FND. His (somewhat snooty) response was 'which is?' I wonder if his partners are more enlightened.

[Ronwyn in reply to FairyfeetX]

No name but anything other than FND as that is why we get treated so bad when it comes to getting treatment , no one is listening to us , MS2 maybe or Neurological Brain dissorder anything that is not mental health

[Hidden]

HERE HERE I and I think many others are ritgh behind you.

It,s a post code lottery out there the first neurologist I saw actually made me worse (no people skills ect). Saw one in a different county all I can say is brilliant sent straight to mri.

I am though still confused as to what it is what caused it and how to improve it.