First time of ever writing to a self help group

Hello

I have a sort of diagnosis of fnd, i have what they call non epileptic attack disorder, to be honest i have lots of weird symptoms but due to other health issues very hard to tie down one from another. I have had alot of imput, cbt, neuro psychiatrist, in hospital couse of therapies but despite such intervention, still feel lost. i would like a neuroligist to touch base with at least , to be able to ask questions, like why doesn,t my leg work as well, why do i feel so very drained and disabled, how can i separate things out etc. Is it wrong to want ongoing help? If no5 how do i get it, suffer from anxiety and depression anyway so it can be hard.if you even just want to say hello that would be good.

Thank you

4 Replies

oldestnewest
  • Hey, sorry to hear you feel like you are alone on this but there's a lot of folks here with similar questions ... Some may have received answers already.

    If you have a good GP then maybe ask to refer you to a nuerologist who specialises in FND.

    If you say on here where it is you live roughly then there may actually be someone nearby who can help you with who they see :)

    Hope you find answers

  • Than, you for writing back. I have recently moved so maybe in a little while I could ask the GP, but because of help I have already had in London, not really sure if they wil be able to , I think maybe I will send an e mail to consultant I saw to see if they can advise who else can help. As it probably sounds I am a little lost and confused at present, it has been difficult as I am sure it is for everyone who writes on here. Perhaps when the fog lifts a little I will be able to write a little more clearly. Thanks again, hope you are OK and getting some help in the way that you need it.

    Jane

  • Sorry to hear about your illness, confusion and how to seek help for yourself. This site is very helpful, good people who help with support, suggestions and sharing.

    Certainly not wrong to want on-going help as this disease is so complex, with affecting some much, with different symptoms, which can be so puzzling..and debilitating.

    Please continue to reach out for help, for support. It certainly has helped me since I connected with Healthunlocked as well as other sites. Do research for yourself, be pro-active, advocate, speak u for what you need withe drs. I know this can be very difficult as they are intimidating at times. Over the course of 6 1/2 years I have had to learn to be my own advocate, as I don't have family members to speak up for me.

    I do hear and understand where you are and what you are experiencing. I am sorry and will share what helps me. Ask for a referral to a neurologist. Prepare yourself with written questions, take someone along with you to the appointment and into the office. The docs are better when there is someone else in the room. Do everything to prepare, focus on concrete, short questions. Speak up. Good luck with getting help for yourself. Keep us posted.

    Tewa

  • Thank you for your reply, I will try to keep up the good fight Jane

You may also like...