24 with FND

[Frankie054]

Hi, I'm frankie! I'm 24 year old female. I have been expericing neurological symptoms, and today I saw a neurological specialist who today diagnosed me with FND. I am sheducled to have a MRI. I have read about FND. My symptoms are obviously very real, but not caused by a physical disease such as MS, but a brain disfunction. I wonder going forward if anyone has had any treatment? Or what to expect? It's very new, only diagnosed today, still have to a MRI just incase but specialists are pretty certain it will come back clear, and will definitely be FND. Any information or support would be welcomed

Thank you

X

[Margretliljan]

Hi and sorry to hear you too are experiencing this. I'm in hospital and have been for the past 5 weeks, receiving intense physiotherapy and occupational therapy to be able to get back to normal life and actually function. I however have/had very severe neurological symptoms so that's probably why I was hospitalised. All the information I've received and found say the same: physiotherapy physiotherapy physiotherapy, preferably with a physiotherapist who's specialised in neurological conditions such as FND.

[Dot50 in reply to Margretliljan]

Hi Frankie, sorry to hear you've been having problems with fnd. There are some good videos on YouTube of Dr Mark Edwards fnd hope, that give more details of what fnd is. Dr Edwards is one of the leading specialists and a lovely person. I found them very helpful

best of luck, Dot x

[boazk]

I have had this disorder on and off for the past 2 and 1/2 years. I am 17 years old now. I'm sorry to hear you have this condition also, but i think it is really good you found this website. I didn't find it until around a month ago. I felt super alone when i was diagnosed because it felt so rare and the doctors had very little information for me.

Personally, i have been to 3 different therapists for treatment. I have Adhd and depression/ anxiety as well as my disorder, so it was very important for me personally to get on the right medicine. When i was on the wrong stimulant, it would make my FND symptoms worse.

I am curious about what types of symptoms you are having. I have had a variety of symptoms, each of which i deal with differently. It can be very hard to accept this diagnosis because of how little is known about it, but remember that you are not alone. I have been able to go months without symptoms because i would fight them off, but that is not the case for everyone with this disorder. In the beginning, each episode surprised me and i never felt any warning signs at all, but over time I started to understand things a little bit better.

My number one piece of advice is not to blame yourself. This disorder is not your fault. I used to blame myself and think that i was just too weak to handle the daily stress of life. Blaming myself and hating myself was the worst thing for me. I realized that this disorder is something i have, not something i do or accept. try to find people who you trust to talk to and if you ever need any support or have any questions, i would love to help. When i was diagnosed, the only thing i wanted was someone else who understood what i was going through, so if i could be that for someone else, i would do it in a heartbeat.

Stay Strong!

Kayla