FND

My son has recently been diagnosed with FND.

He is not coming to terms with his diagnoses and tried taking his own life. He is convinced he has a life threating condition but the doctors won't help him.

[kev60]

Hi sorry to hear your news , i hope your son is ok. i have been there myself a while ago and not fnd related but i was blue lighted to hospital stomach pumped and discharged the following day, if your son is willing and wants help he needs to call sumaretons or contact talking therapy in your area(uk) or if GP not available go to A&E. As for FND mine was first thought to be a stroke, but they could find anything it took a further 14-18 months before they confirmed FND. my problem(main) was walking and i have had to learn how to walk again and have progressed well but have trouble as i walk into walls etc. FND is not life threatening, but there are varying degrees . i went to a seminar at kings and was amazed at difference in patients i actually felt like a fraud until i fell through an open doorway and people rushed to aid me. although your body is normally ok the brain is sending either the wrong signals or they are not getting through. as a lot of people say the body is the hardware and your brain the software and the problem is with the software. you need neurology, neurophysio and possible talking therapy hope this helps hope your son gets the help he needs.

[Hidden in reply to kev60]

Sounds like you have really been through a tough time.My son has always suffered mild health anxiety, his father passed away when he was a young boy.

His anxiety worsened during lockdown , panic attacks turned into seizures, then his legs started to give way. When he becomes stressed it starts to affect his body, his walking is affected , his hand movements & even his speech.

One time at the hospital whilst having a seizure one of the doctors accused him of being an alcoholic, he doesn't even drink.

He has been given an appointment for St Georges for July, i'm really hoping this will be the start of recovery.

My heart goes out to all those who suffer with FND, such brave people.

I hope you are as well as can be, your struggle is also an inspiration to others, it gives me hope for my son.

Maria x

[kev60 in reply to Hidden]

Hi Maria, glad your son has an appointment St George is good as well as Kings, when i was first in neurology at kings they just did not want to say what was wrong. it was only when they sent me to neurophysio that it was suggested that it was FND and it just so happened that the physio was doing a trial for FND with St Georges and Kings and i was put forward that was jan 2020 of coarse it got cut short because of Covid, but i did make physical progress my walking improved 60% but has stagnated. I was advised i may never work again as its to dangerous(i worked in the glass trade) , but it depends on the severity ,i tried to get a job stacking shelves but i could not pick up the box if on the floor. But other people have been able to do some work or activity even with FND . I have found that although my walking has improved my brain has not , i forget conversations while i'm having them mix up words but my wife is good at guessing what i mean . i hope your son get's the help he needs hopefully you will be able to get physio and help with the thinking process good luck. kevin x

[Hidden in reply to kev60]

Did your symptoms just come out of the blue?Its great to know that your walking has improved.

My son is able to walk normally at times but all of a sudden his legs will either give way or his feet will start dragging his arms and hands bend at the same time, speech becomes slurred.

It must have been tough for you to have to give up work , i really hope things get a lot more easier for you.

Sounds like you have a good woman by your side.

Keep smiling , your strength is so encouraging.

Maria x

[kev60 in reply to Hidden]

Hi i was a bit of a workerholic averaging 100hrs per week until i met my wife and cut down to 50hrs per week, but one day i had a pinched nerve in my left shoulder so it was impacting work. so of to the GP gave me Gabapentin which i took for only five days i was still working and one morning got to work and just having the first coffee of the day and everyone kept staring at me then a manager came out and pointed out i was swaying from side to side and sent me home, i actually did not realize what was happening so went to the gp then straight on to a&e St Thomas was slurring my words and walking around like a rag doll then after 8hrs bluelighted to Kings suspected stroke 3days in hospital various tests and nothing found. referred to Neurology my first appointment was almost a year off (not best pleased) got my GP to chase and chase got an urgent appointment within a month. so 2 years on 7mri ,7 ct scans various x-rays and one PET scan oh and 100+ blood samples told FND. now my 2 neurologists have said nothing more they can do . sad but i will keep on at them and the gp until i get some semblance of treatment, i have found if your to nice they tend to walk over you . so you must insist when you speak to doctors(but dont get angry) to get treatment. also in the last 2 years with all the tests found COPD and GORD and degeneration of the spine. oh by the way they think i had an allergic reaction to Gabapentin and this caused the FND. keep safe both you and your son, kevin

[Hidden in reply to kev60]

Oh god reading this is so much the same as Christopher my son.I really feel for you.

Chris was unwell last year during COVID first lockdown, we all had but couldn’t get a test .

Chris then went on to have stomach problems, lost 2 stone in weight, then couldn’t swallow properly. He was put on various antibiotics, some didn’t agree with him. He kept saying mum I know my own body & something isn’t right, he kept going to A&E telling them there is something wrong, one doctor took notice and he was examined, scanned & diagnosed with small clots on his lungs. He was put on apixaban for 3 months.

Because of this he was & still is convinced that all the antibiotics he has been given have caused the symptoms he now has.

He has had mri, lumbar puncture etc, so many blood tests , has been to A&E in all different areas over 40 times in the last 5 months, because he is so desperate, he tried to take his own life 20th April because he could no longer cope. Thankfully i checked on him before I went to bed.

There are days he says mum you should have left me. It breaks my heart.

We have been lucky to get the appointment we have in July at St George’s , just have to stay positive.

I Just to thank you, because you really have helped by sharing your own experience.

God bless you.

Thank you Kevin.

Maria x

[kev60 in reply to Hidden]

hi again, i would like to thank you to writing to you and chris has helped me it makes me feel a little bit useful . i know it's hard but chris will need to learn patience as the NHS work but sometimes very slowly . it might help if chris starts a journal to write how he is feeling on any day, i know when i see doctors i usually forget alot of things i want to ask them and also to inform them what is happening. i remember seeing my gp about something and as i was leaving i just mentioned i had trouble swallowing food and liquids all of a sudden i was on a 2ww for acheck at guys cancer unit turned out to be my throat muscle's have become weak. and now i am under gastroenterology . i remember the days i would take a painkiller maybe once or twice a year now i'm on 8-9 painkillers per day but have little effect. funny how life goes . tell chris FND is NOT life threatening and it can improve and he should learn to not worry about other people(i used to) FND is REAL and you can get better. good luck kevin

[Hidden in reply to kev60]

You have really helped me Kevin & I thank you for that.Hearing your story about your journey is so similar to what Chris has already gone through.

Living with FND is a daily struggle for all you who have it.

You are all amazing people.

I just want to support Chris the best way I can so any advice you could give me would be greatly appreciated.

Keep smiling

Bless you & your family.

Maria x

[kev60 in reply to Hidden]

hi , I think you need to remember that although you are looking out for Chris you NEED to look after yourself. my wife Lynn is very understanding and days are planned on what i feel like when i wake, usually we go to the local shops but on occasion we venture further and Lynn can shop for clothes or just looking at anything(as luck would have it i do not mind just looking) but she is always seeing if i am ok , thenif i am waining we head home. i do sometimes feel i need to do more and we have been to see our grand daughter in southampton (she knows me as Grumpy lol) but then following day i am wiped out. hopefully we can get lynn down there for a long weekend just three girls together. and i will just sleep as this is the only thing that gives me pain relief( i can sleep for upto 30hrs at times) average 15hrs per day. so look after yourself as well as chris and hopefully he has good week. kevin

[Hidden in reply to kev60]

I have had my moments, closed my door & cried but in a strange kind of way it has made us closer as a family.Lol Grumpy, children say it as it is bless.

Although times must be stressful I’m sure your wife is just grateful you are still alive and as well as can be. I don’t think your 3 girls would want you be stuck at home alone , they wouldn’t have anyone moaning at them lol.

I really hope your pain becomes easier to bare & life brings you the joy you & your family deserve.

I enjoy the rest of the weekend.

Maria x

[geordie-girl]

Hi so sorry to hear that, if your GP is understanding ask for referral to St Georges Hospital in London Professor Mark Edwards is the top person and deals with FND. It is very hard to accept the condition and I know what he is going through. Hope this helps. Take care and keep safe

[Hidden in reply to geordie-girl]

My sons started with seizures at first, now his legs give way & his walking, bodily movements are affected when i find he gets stressed or tired.He has always had mild anxiety since his father passed when he was little, but this has come out of nowhere.

He has an appointment at St Georges in July so fingers crossed.

How are you doing now? How has this impacted your life?

Thank you for replying.

Stay safe.

Maria x

[SNOW10 in reply to Hidden]

If you haven't told him yet, I would recommended him getting on this site when his body let's him. I felt the same way he did few days ago. I am in my late twenties. He will be able to read our stories and relate and even ask questions. I would say getting on here and talking to other fellow FNDers is what has tremendously help me because on here you are venting to someone who get it. I send hugs, comfort, and someone with understanding his way. Having FND is extremely difficult on top of trying to find right doctors make if even more complicated. Send hugs and comfort your way too trying to help an FND patient is alot of work on a care giver. I have a huge list of symptoms and trying to advocate for yourself alone is burdensome. In my opinion getting on here is by far the best therapy I have received vs the professionals.

[Hidden in reply to SNOW10]

Thanks for your reply.I've tried to encourage him to join this site & watch various short videos of other people with FND. Right now he just won't acknowledge any of it.

I have just been looking on the internet, sites like this to educate myself so i am able to help him the best way i can, without being to overbearing.

Hearing your stories has helped.

I really hope you receive all the help you need. At the end of the day if it wasn't for the courage of people like you speaking out about how FND has affected you i would be lost, so i thank you.

Wishing you well & a big hug right back at you, bless you.

Maria x

[SNOW10 in reply to Hidden]

Seizures is what started for me first also . I have to remind myself that God got me even when I'm weak. I have totally change my attitude this week. I decided either people gonna except the new me or not (including family they not exempt they were apart of the very ones who mistreated during the beginning of my illness)My excitement for this weekend is me ordering an FND awareness shirt. I understand that this is definitely a rough journey . I understand that even though I have an illness God is using this illness for a reason and at the same time it also has bless me in a way to help others around me. God is good. I definitely have a testimony. Sending prayers you all way. Have a bless night and I pray he come around its gonna take time he has to go through his stages of grief because its indeed a scary thing when it first happen and you have so many questions in your head. I found things that work for me. He going to have to learn what works for him and listen to his body at the same time. He gonna have to be patient with himself cause it get frustrating.

[Hidden in reply to SNOW10]

You are a very special young lady. I have said to my son that this may well be one of the toughest times of his life but he will get through it & one day catch someone when they fall.

You have FND but it doesn’t define you as a person.

All of you who have replied to my post you truly inspire me such courage & strength.

Thank you Snow

God bless you xx

[SNOW10 in reply to Hidden]

Also reassure him it's okay to cry the more he resist his body from doing what it want the worse it is on the body also a tip I learned.

I'm glad he has you🙏

[Hidden in reply to SNOW10]

I’m blessed to have him.I hope you have plenty of support as well x

[SNOW10]

How old is your son???

[Stone86]

Hey Maria! I was recently diagnosed with FND at 34 years old. I woke up one day and couldn’t use my right leg to ambulate, it just wouldn’t work for the life of me! I saw multiple doctors who all said I was fine and at one point one called me a malingerer. A year passed without being able to walk and still searching for any kind of help. The depression I felt was horrible. I lost my job, my home, my independence. But thankfully I have an amazing Mom like you are for your son and she continued to love me, validate me, and help me look for help. I would have been dead without her.

After a year a neuro diagnosed me with FND. But of course insurance e doesn’t pay for FND here in the USA so I paid 13,000 out of pocket for treatment that involved PT, OT, and psychology. I didn’t believe in FND when I was first diagnosed and it took me awhile to accept it. But through treatment and people BELIEVING in me and telling me I’m NOT faking and that FND is a REAL neurological disorder, I am now walking again! I do still have weird seizure like activity sometimes and some days walking is harder than others, but it’s soooo much better than it was.

Just continue to be the amazing Mom you are for your son and continue to emotionally support him and reassure him that FND is REAL and he isn’t faking his symptoms

I wish you and your son the best of luck in your journey!

[Hidden in reply to Stone86]

Hello, how are you? hope you are doing well today.I have to say thank you so much for your message it brought a tear to my eye.

I find you absolutely amazing, such courage & strength , your determination is astounding.

My main concern is why is it FND isn’t recognised on a wider scale and why is it impossible for some people to acknowledge that it is real .

The last thing a person who is suffering with FND needs is another person especially a professional telling them it’s all in your head.

I see my son’s daily struggle, it breaks my heart, how cruel FND is and how it creeps up out of nowhere .

He has experienced the ignorance of others, being accused of being an alcoholic because of the seizures , he doesn’t even drink.

I don’t know how FND impacts your lives because I’m not a sufferer but what I have learnt is how brave you all are, don’t give up the fight.

People like you are helping people like me and il be forever grateful.

If my son is having a bad day I tell him there is always hope that tomorrow will be a better one and we will get through it together. Reading your story gives us that hope. Thank you.

God bless you & your family.

Maria x

[Brokendeer]

Hi I have not read all the post replies - so forgive if there is an overlap.

Reading about your son's symptoms, I wonder if you have considered Hemiplegic Attack?

I had a neighbour once who kept having bad `stroke like' episodes and they told them it was all sorts of diagnosis, inc. FND.

After years of fighting medical opinion, medical insurance companies for non-payment of various different speciality consults they had tried etc They found a brilliant Physiotherapist who established that my neighbour was actually suffering from a major nerve being pinched in their neck when looking up!

This temporary restriction of blood supply was caused the Hemiplegic Attack (sometimes full blackouts) and if they wore a medical support collar when in the car (i.e excess motion activities) and limited their time/trips in airplanes (atmospheric pressure issues brought on the attacks too) and obviously did not look up more than a few seconds, preferably not at all - they should reduce or stop these attacks all together.

It is amazing how a physical shift in the body can go unnoticed for years and would advise seeing a good Physiotherapist and if possible, the best is a Muscular skeletal Physiotherapist who understands more and can do specific rehab exercises - although they are few in the field, there must be some registered online?

Look for the calm in the Storm!

[Hidden in reply to Brokendeer]

HiThanks for your message.

My son has an appointment with a neuropsychologist at St George’s in July.

He has had brain scans, lumbar puncture, mri scans , blood tests etc.

We are at the start of our Journey, all his symptoms point to FND , seizures, body jerking movements, legs giving way, not being able to walk properly when tired or stressed. Memory loss , problem with speech list goes on.

He was diagnosed a month ago now.

He has good days and bad.

Just have to wait until July and see what happens then.

[vashieldmaiden1]

Praying for you and your son! Doctor's not understanding FND is so so tricky! Have you ever heard of FNDHope.org ? It is a super helpful website that you could share with your son and his doctors to learn more about FND.

[Hidden in reply to vashieldmaiden1]

Thank you for your kindness.Yes I’ve had a look at the website. My son won’t look at anything to do with FND at the moment, he just won’t take it in.

I have to let him do that at his own pace.

Just hoping that when we see the specialist in July that things become a little easier for him to accept.

In the meantime i just try to be there for him in anyway possible. Like I said Chris will always be Chris FND will not defeat him.

Hope you are well.

Maria x

[Misstea]

I know I need to post an intro for myself but can or would your son post here? this is the first time i had a chance to browse around and I'm finding it strangely reassuring that some people are also having issues walking (it's really annoying to say the least).

[Stone86 in reply to Misstea]

Hey! My main FND symptom is my gait. I was unable to use my right leg to ambulate without crutches for a year before I was finally diagnosed with FND. I too totally didn’t believe in FND at first. My gait, unlike a lot of others I have come across, never changed the entire year. There was never a moment in a years time that I didn’t have the same persistent gait issues. I was dead set that there was some mechanical issue going on or my brain was totally broken. BUT I was desperate to get my life back and found a specialized program for FND, what did I have to lose? I went into it telling them straight up I don’t believe in FND, and just one week after neuro physical therapy I was a true believer in FND and on my way to hiking again. I still don’t quite understand FND, and there are days where I still question everything about the diagnosis, or think I made all this up magically, but FND is real and we can get through this! I wish you the best of luck! And please message me if you have any questions! You got this!

[Misstea in reply to Stone86]

Thanks for replying. It's good to see you're keeping on trucking through this. In my case, I want to rule out any autoimmune issues, especially lupus. Some of my blood work hints at autoimmune but all the doctors I've been to say I'm fine. But given where I live, I don't always take their words as final.

[Stone86 in reply to Misstea]

For sure! I too had to cover every single MRI and blood test that my insurance would cover because the medical fields, especially in the US, is soooo beyond screwed I don’t believe ANY doctor at face value. If they don’t test for it, where do they get off saying there is “nothing wrong”. Hang in there girl and keep advocating for yourself!