Is it fnd or am I going mad

[Chelfnd]

Not sure we're to start 1st time posting any were here goes I'm 51 year old women and 3 years ago I was lying down and I started getting pins and needles in one side of my face that was the start than over the next 3 years all went to other side of face in my hands arms legs feet and than I would be numb and than I have pain never a pattern always different , some daysI could not walk or I looked like I'm drunk. Some days up to 10 times dizzy spells and other day delivery none. I started realising I forget things a lot. My husband was finding me hard to live with because I forget words or get confused. It's been very hard to deal with as I have a bad neck injury and doctors said it is most likely that. I knew this was not right how is it possible to walk normal and in seconds I can't walk like I telling my brain let's go there and my legs not working almost like a Robort. My right side is the worst my right hand often drops things and my right foot forgets to lift of the floor when I am walking. Tired all the time is a real big problem. Other times I walk up stairs and next thing I'm going up them on my bum. You really could not make it up. Always my handwriting s going backwards I start normal than I am writing like a child. I have 5 mri scans in the past 6 months I do not have ms. I thought I did the doctor thought I did. Now they say we can't find nothing wrong even though u clearely havery a Nero problem going on so it's find. I feel confused r they saying chelike it's in your head is that possible or is there really something going on really getting fed up with it all

[BuntyP]

Hi, I'm quite similar only it's my left side that is affected. I look at fnd like I would at a rash. The important thing isn't that you have a rash, it's what caused it, how can you make it stop and how can you prevent it happening again. There was a good scientific paper last year that showed the fnd happens after any or a combination of these events; bacterial or viral infection, head injury, car accident, operation, traumatic life events. (remember, traumatic life events decreases your immune system and alters the hormones you produce having an effect on inflammation). Reading recent research on Alzheimer's and Parkinson's which shares symptoms with fnd,it's looking increasingly that it's caused by inflammation in the brain. This would explain why different people have a crossover of different symptoms, why they're symptoms can sometimes resolve and at another times get worse or change. The problem is determining what has caused the inflammation and then what can treat it. It's only recently that scanning has become accurate enough to detect low-level inflammation and it will take some time before there is further understanding and treatment. I too find if I sign my signature several times it starts like an adults and ends like a 10 year olds. My walking is affected and I have freaky arm movements which look like I'm waving vigorously at someone very far away whilst staggering about like I'm drunk! Try to be kind to yourself and remember your body is doing the best it can.

[Hidden in reply to BuntyP]

Well it's very similar to what I go through everyday. Today I went to work with my left leg being unable to move properly. It felt like I am standing on one leg and balancing on a prosthetic, even though I can feel my leg being touched, I just cant move any part of that leg voluentarily. I usually get tic movements like tourettes or siezure or stare or speech problems. Sometimes I cant get up and stand I use a walker at times. I know it comes and goes. I don't know how long it happens for but I have to always try and remind myself that its no ones fault and that there are better days.

Quality of life is the real solution and being busy. I dont know what your situation is like but I am a mechanic for vehicles in the USA. where I live neurologists dont want to give treatment, they say that I have to work it out and theres an underlying problem I havent dealt with, Which I dont know what it is. The only treatment I am given here is mental health. I see a therapist. She's good and I am being as open and open-minded as possible. The symptoms aren't really going away but my understanding has changed and it helps me not to stress out or put myself into a catagory, just keep my head up and keep going.

So please dont worry keep looking out for a treatment for you and keep moving to stay positive because there will be bad and good days so appreciate the good days. I know I do that now

[Autmnrain37 in reply to Hidden]

There are a few places in the US. Mayo in Rochester, MN. University of Louisville in KY (the More program- going there in Jan. For preliminary appointment) and I believe one in California that have intensive multidisciplinary treatment for FND.

I'll let you know if it works for me.

[Jazymay in reply to BuntyP]

Hi,

Just wondered if you have a link to the paper?

Thanks

Jaz

[tabey]

dear chelfnd

Welcome and first of all u get a hug and i promise you your not going mad all that is happerning is real.

i got a leison on the brain stem some say its ms some say its fnd some think im a total fruitloop.

all you have said has attacked me in many ways im a 4o year old male but it started when i back in 2010 but has got worse over time 2016 was the knock out for me it took me down and i cant retake control its not that i dont want to i cant

please forget the people who say its all put on its it the mind its total rubbish i never said before what i did for a living before this happend because 1 it cuts me up inside knowing i cant do what i loved any more and 2 you tell a doctor what you did for a job and they like oh u know to much your waisting our time so i really get the fruststion your facing

but i take strenth from people like yourself and your story becsuse we never spoken or met before now but have sufferd the same symtom plus more like many others on here and if that does not tell the medical world to wake up then they really are idiots

there was a saying at my work if its not written down it didnt happen and if you can google it and its not in the top 10 then its not credible i even gave the neuro website to the nurse in my pratice and said this will explain all her responce was oh some boreing weekend reading lucky me i think i pass neuro really is not my thing!!!! and she ment to be there to help with people like her who did her training over 15years ago we are doomed until they start making fnd more aware we wont get the surport but that day is coming we must keep fighting these trolls and hold our heads up high .

dam maybe i should go into law lol

sorry its been a huge reply

but we are both suffering from a long term neueo condition with hope could get better but never bck to norm or it could stay the same with ups and downs this was told to me by kings london so im sure they know what there on about

keep fighting

regaurds

Tabe x

[Bailey09]

Hi I also have those symptoms mine is more on my right side , my gp though I had a stroke had all the test mri scan and ct scan came back ok , then I had an appointment to a neurologist he told me I had FND xx

[Leesaloo]

Hi, 2 years ago maybe more, I was given the FND symptoms website and I had at least 95% of them, nearly 4 years on I have under 10%. The ones left are life changing but I now have a quality of life I haven’t had for 3 years. Every day is a struggle but if I don’t overdo things, relax, take my time I do have better days. The short term memory is annoying but I bet my partner gets more frustrated then me, he says I say one thing to him one day and the next something different, I do get embarrassed but I can’t change it, I’ve just got to learn to go with it. I’ve had 1 months rehabilitation in London Queens Square last December and now when I limp, drag foot, foot turns in I always put my heel down first. One year I mainly crawled around, using furniture with Parkinson’s symptoms, the shaking only starts now when I’m overwhelmed by concentrating, noise and fatigue. A lot of my symptoms eased on there own over time.

[Borrow]

Hi,

Welcome to the wonderful world of FND!

FND is when your brain is sending and receiving faulty information. It can affect any part of the body and in many and varied ways, hence why we all have similar and totally different symptoms and even different degrees of these problems.

It is not in your HEAD but it is in your BRAIN, two very different things.

We can honestly do very little to control our symptoms, in fact FND controls us and the only way to get diagnosed is via a neurologist.

Read as much as you can, talk to your doctor and other health professionals and good luck!

You have made the hardest step by writing here so well done!

Merry Christmas and a Happy New Year

[Itcangetbetter]

I was told that they couldn't find anything wrong for years.

I suggest you ask for a referral to a movement disorder specialist.

I can't explain the relief when I jerked myself towards mine for the first time and he said "I think I know what this is, I've seen it before"

This was after seeing 2 neurologists, having 2 MRI's and a lumbar puncture.

It can be an incredibly frustrating condition.

I had massage. Accupuncture. Yoga. Adopted a vegan diet and stopped all meds.

I'm 70% fully functioning now.

I still have relapses but they are fewer and farther between.

Keep the faith. It can get better

[Itcangetbetter]

P.S. when I couldn't walk forwards, I was advised to walk backwards, which was easy because backward walking messages from my brain to my body were getting through.

I was horrified by the number of idiots who shouted horrible things from their cars.

[Stanleyleonard12]

Hi Chelfnd,

I started having symtoms about two years ago this month. Started with extreme fatigue and hand tremors. By April my symptoms had progressed that I had to go into hospital. I couldn’t open my mouth or hands and my left leg had gone weak. I was there for 6 weeks where I was diagnosed with FND. Before that though I was given a diagnosis of stiff person syndrome and was given IVIG. This drug helps with inflammation your research is fitting with what I experienced. I was given a five day course of it and after it had never felt better. However a few weeks later my symptoms returned. I’ve done therapy, I’ve done physio, I’ve done speech therapy, I work with a neuropsychiatrist and nothing has helped. My symptoms have progressed to the point where I have no quality of life. My whole entire body is effected by FND. I’ve lost the ability to write and speak. I can’t walk without a walker, my elbows have contracted. I have constant pain and nausea. The stiffness in my body just keeps getting worse especially in my legs. Some days I can’t open my mouth and have extreme pain in my face. My body seizes up and I can’t move for hours at a time. I drool and choke all of the time. I have no appetite and have severe stomach pain. Stairs are impossible. To complicate things I have a very complex medical history. I’ve had cancer twice, type 1 diabetic, neuropathy, two genetic mutations, cardiomyopathy. But this illness is worse than all of the illnesses I’ve listed above yet I’m supposed to be better by now. I can say this because I’ve had it twice FND is worse than cancer. The stigma and the lack of information. I was guaranteed to be all better in 3 to 6 months. I haven’t come close to my normal I was a full time student, volunteered and exercised regularly. Now I have nothing. Once a doctor sees I have functional any doctor that sees me with new symptoms they just blame it on functional. I hate this illness. I’m 25 and I want my life back.