Newbie

Hi, I was diagnosed with FND yesterday by my neurologist, I also have fibromyalgia...have has that for about 7 years, epilepsy & depression & my gp has been fobbing me off with that all of my seemingly random & distressing/very disabling symptoms were all down to fibro/epilepsy etc. I finally saw a locum on a very bad day where the left side of my face was visibly lower & my cognitive functions were non existent & got me an urgent referral. Up until yesterday I had never heard of FND so am searching the internet for information....the neurologist was extremely vague about the actual prognosis or chance of getting better or worse, so would be really grateful for any info or indeed just to speak to others who have this.

Gentle hugs

Janey x

3 Replies

oldestnewest
  • Hi Janey

    Not much is known about FND but this is the web site most of us find most useful. You can trust the info you find there. It takes a while to read through it all because it has loads of info. Its run by Dr Stone who is a consultant in Scotland. He and his team are considered to be "leading lights" in all things FND.

    neurosymptoms.org/

    Face Book groups I would recommend are facebook.com/groups/3228480...

    and

    facebook.com/groups/4461419...

    Both are closed groups . Many of us have found both help and friendship on these two groups .

    Gentle hugs to you too

    Lynda x

  • Also our website fndhope.org has a lot of patient information. Such as patient advice, Natural and self help healing, what do I do now??, awareness videos, stories of others with the disorder, etc. Many people have functional type symptoms for many reasons different reasons it is important to for you to find the cause of your symptoms. Some it is from psychological but for others there are physical reasons....I found the most help from a hematologist. Gentle hugs your way

  • Many people are going through similar health issues. You are truly not alone. I think Lynda gave some excellent information to links. The website fndhope.org is also useful as mentioned above this comment. I urge you to be proactive in your approach to finding out a cure or at least a way to make life a bit brighter.

    My neuro suggested I make small goals. These goals are to help me find a better quality of life. Just being able to go some place, any place, other than a doctors office is fantastic. It really helps with the depression.

    I hope you find what you need. I found 6 ladies with whom I met through gaming on FB and we formed our own FB group (secret of course). Each of us has had or is going through a lot of health problems. We can rant, laugh, or simply talk about our day in that group...nothing is taboo. I had my phone with me right up until I went into my last surgery. Who was I talking to...my peeps in that group. I may have never met them in person but they were still able to be with me right up until I went into the operating room. I'm sending you a big smile and gentle hugs...you are NEVER alone.

You may also like...