FND

[Ag2520]

I was told i have FND about a year ago after suffing with siezures and a lot of the other things thats go with it that caused me to have to go to hospital and was told they think i have Me to after many tests. I thought i was loosing my mind and felt like no one believed me, and i was wondering if anyone else struggles with it not only the symptoms of it but feeling lonley to. i feel like im on my own sometimes because people dont understand it and because i find it hard to speak sometimes and get my words across as one of the syptoms because both the FND and ME can impact each other. I was just wondering if there is many other people who understand or have FND or expreience the same things.

When I was first diagnosed with FND I found FND Hope UK, they run art journalling for wellbeing sessions which were so helpful with all those feelings of isolation. The art was somewhat incidental, although the person who runs it was lovely and always gave really helpful open-ended prompts, but the real value for me was getting to chat with other people going through a similar thing. Lots of us had trouble with speech and I used to use the chat box to communicate if I needed to.
https://fndhope.org/events/category/fnd-event/ (it seems to be an international calendar, but I think the Friday evening art journalling sessions will still be the UK ones)

My daughter has FND and someone in our street also does. My daughter also struggles with verbal processing and speech. FND is actually quite common, though not well researched and it is very difficult to find good support. Have you come across Facebook support groups like FND Action? https://fndfriends.com/ might also be of interest to you.

If you have not come across these two books, we found them the most helpful. Most of the content is relevant for adult patients too.

Treatment of Functional Seizures in Children and Adolescents: A Mind-Body Manual for Health Professionals, free Kindle Edition by Blanche Savage

Functional Somatic Symptoms in Children and Adolescents: A Stress-System Approach to Assessment and Treatment, free Kindle Edition by Kasia Kozlowska

I was dx with FND around 12 years go, once the MRi ruled out MS.
Mine was horrible ataxia (lost the ability to walk, balance for a long time) and sometimes slurred speech. I was put on meds for Episodic Ataxia for a while but couldn't tolerate them. Mine started after a virus.
It's crap... despite evidence, FND , like Fibromyalgia, ME, is treated as a wastebasket dx and considered more psychological than a physical illness. As someone with no particular trauma and a healthy enjoyment of life I found the attitude insulting!
This year I finally went back to the Neuros as I had developed horrible myoclonic jerks that went on for hours. I'm not usually a believer in supplements but was prescribed B12 also Vit D3 as was low on both.
Low and behold the jerks have STOPPED! I still can't believe it. The combo of vitamins have allowed me to exercise, get back to long dog walks and crack on with life. I still have episodes when my balance just goes, but not for long.

In other words... things have improved, but a degree of that is me going fuck this, I am NOT going to be held back. If you haven't.. make sure they test you for vitamin deficiencies... I'm not cured, but after years of significant disability I am functioning better and accept that some of it is me for life but it can improve.