Hi there! I'm new here

[Craft_GalaxyDefender]

Hello, I'm here to try and learn more on FND.

I got my diagnosis in 2019 and feel like I know lots about this condition but also feel like there is much more to learn.

[HenriettaPoultryfoot]

Good Morning.

I have found this group quite helpful. Fellow FND sufferers have encouraged me, assisted me in finding information, offering insight, shared symptoms and coping strategies.

Mostly, individuals have given me a sense of community and support. The folks here get it! Most of the world doesn’t have a clue.

Welcome. I hope this group serves you well.

HenriettaPoultryfoot

[sgaetna2013 in reply to HenriettaPoultryfoot]

Hi Henrietta, What group are you referring to? Where does it meet? Thanks.

[HenriettaPoultryfoot in reply to sgaetna2013]

Good Morning sgaetna2013..

I was referring to this group. The conversations, questions, and suggestions various people have on this site are beneficial to me. I am not in any local face-to-face or Zoom support groups.

Sorry for the vague statement. I wish you a good and positive day.

HenriettaPoultryfoot

[Lorinda1]

Welcome. This is a very supportive group,

[kev60]

hi and welcome, i to was diagnosed at the end of 2019, but it took 18 months for the neurologist to confirm this even though it was my neuro-physio who thought i had FND. i to feel like i know more and have educated my GP and various consultants as although it is known about and is the second most diagnosed by neurology it is not known generally in the medical field. i walk like i am drunk (dont actually drink) and i cannot count the amount of times i have had to explain to the professionals which i do not mind what is wrong. i was lucky i got on a trial for FND and so learnt a lot from that and it was working but the COVID hit and my trial was cut short, i have now been dropped by both my neurologist's as there is nothing they can do. i had to fight to get my GP to officially put FND on my note so if others read it they see whats wrong with me. i found you need a paper trail as gp will not take your word for it they require medical proof . i hope in the future to be seen by neurology heres to fingers crossed. since its on my paper work i have been able to put it on official forms like PIP and as i was told i would never work again i am on uni credit. hope all goes well and you find the treatment you deserve regards kevin

[Craft_GalaxyDefender in reply to kev60]

It is awful having to explain to people constantly what's going on. Especially when it's something unrelated to FND and I have to go through all the explanation again before anything else. Sorry to hear about your work, I had to give up my job as they said they'd fire me on medical grounds otherwise. I have a brilliant Neuro physio and am awaiting further intensive treatment. I hope you get seen by neurology where you are now. Good luck.

[HenriettaPoultryfoot in reply to kev60]

Good Morning kev60.

I imagine all in this group understand, to some extent, your frustrations with the disorder AND the medical community at large.

I have been proactive in perusing all avenues I can think of to promote my situation to the medical community. I wrote an extensive post recently that outlines my game plan. I am always respectful to every doctor. I do have a matter-of-fact approach and arm myself with as much information as possible. I avoid becoming too emotional but it sneaks in. I am passionate about receiving help.

I don’t know where in the world you are. I am in the US. I don’t pretend to have answers as to your medical system.

Stay strong. Stay positive. I am rooting for you!

HenriettaPoultryfoot