Just Diagnosed

I have been to London to she a Movement Disorder Professor, I had been taking Parkinson's medication but I was told today I don't have Parkinson's but I have FND, l hard very bad tremors and problems walking, fatigue, freezing, insomnia, wide gate.

I have been offered physical therapy and alsomto see a Neurological Psychiatrist.

I will take up all offers of help, I feeling like I am a fraud and it's all in my mind but Neurologist ashore me that not the case.

Look forward to meeting people on the same journey.

5 Replies

oldestnewest
  • Hi Buttie,

    This diagnosis can be really frustrating as it feels like lots of disconnected things with no real answer.

    It doesn't make you a fraud especially if you have been diagnosed and offered therapy. It sounds like you got a good neurologist as some on this site don't live near neurologists who specialise in FND and struggle to get therapy after diagnosis.

    Take all offers of help and just see for yourself what helps you and what doesn't. It's trial and error for everyone as we go through different symptoms and severities but we are a supportive group so you will always get replies and support on here.

    Good to have you on board, feel free to ask any questions, chat about your day or respond to us as we are a chatty bunch.

    And it's not in your head so I'd ignore reading things like that. I know there are some still on the internet but docs like Jon Stone and Dr Edwards are teaching that it's not in the head it's physical but they just don't know how it works. The brain is the most amazing and complicated thing, and frustrating for us, but we are positive someone will work this out

  • Welcome buttie, your definitely not alone, all suffer in different ways but all help with advice and support. I was personally told by my dr for a year it was in my mind and was depression and anxiety, 3 psychiatrist later he still ignored them and wouldn't send mt to nuerologist, we had to keep paying private, he even ignored 2 emails from nuerologist. I now have enough documents to prove I have FND and a new dr, but understand how you must think, the nuero nurses I have seen gave me a leaflet to take out with me explaining I have FND, it isn't in my head and the pain and seizures are real. It's took a long time with fighting an ignorant, arrogant dr but I'm finally diagnosed, now waiting for treatment, fingers crossed in London hospital although over a year waiting list for inpatient, and still waiting to be put on list, always here if you want to rant, ask questions, anything you think off, best wishes. Lisa-anne, best thing on here we all know what your going through.

  • Buttie.

    You are a real person. Please do not feel otherwise. Accept the help and keep asking questions about your health and what you are going through.

    I am glad you have found us. We learn from each other.

    I hope this is a better day for you.

    Dan / Seattle

  • Hey Buttie,

    Welcome to the group! We're all here to support , share advice and listen to each other's concerns, frustration, anger, tears...

    As Houseman Dan says accept any help that's offered! Something's will work some won't ...

    I personally though I was loosing my mind and that I needed to be on a psych ward until a Dr said no it's real your not faking and gave me the website and said good luck... met prof Edwards and his team who said it's real and even wrote to my Drs it's all real... got worse not better which is expected ! Only on one Med for fnd which is for the jolts... hugs , we're all here for you xxx

  • Hi. I understand how confusing it can be when you are new to the diagnosis of FND. Please be assured it is NOT in your head. Your symptoms are real. There are many good neurologists who are pushing forward in their understanding of FND. Mine says that in time he is sure that there will be tests that show what is occuring - it is just that it is not a well researched and understood disorder. FND Hope website has some great imformation to read and is linked in with a current FND scientific research which you can participate in. The more research is done the sooner we will all have more help and support. Here is the link to the website:

    fndhope.org

    I have also had a problem with B12 deficiency alongside FND. It has caused its own neurological problems and it seems that a lot of people with FND have this issue also. My neurologist has me on B12 injections (I started with frequent loading doses and now am on 3 monthly injections). I am also haveing physiotherapy which has been helpful for my balance and gait issues. I am on the wait lost for speech therapy and neuropsychiatrist. In regards to the neuropsychiatrist, my neurologist said it only helps a small percentage of people but it is worth giving it a go in case it helps. As I have myoclonic body jerks I hope I can find some waybof discovering what the trigger is. If not I will just have to live with it I suppose.

    Another great site is:

    neurosymptoms.org

    One of the biggest things I learnt after my diagnosis was that I have to learn to pace myself. Listen to your body. Dont overdo it on good days and dont do too littpe on bad days.

    All the best 😊

You may also like...