Newly FND Diagnosed what now??


Monday 9/2 at 7.00pm and suddenly I couldn't walk properly thought I had an inner ear infection until I was rushed to hospital ( after falling over ) 4 days in hospital and after many tests the neurology doctor said you've got Functional Neurological Disorder you can go home now as long as some can watch over you. So here I am no information , no medical support eg walker or meds and I suppose I just have to wait for my appointment for physiotherapy , doctor wants to see me in 2 weeks I don't know what for ,so many questions.

I have always suffered with depression and anxiety and having 2 autistic children been very stressed as of late but have always been fit and active running etc only being 39yrs old .I started suffering with migraines about 6 months ago then really tired and then wham. Now according to my other half I continually rock and jerk while sitting or standing and walk very jerky like I am being electrocuted ,very tired just walking from room to room is exhausting and kind of dangerous ( fall risk apparently ) and everything I do seems like a major effort and in slow mow. I suppose the biggest question is am I going to be like this forever, then what help is there for me in the UK, should I stop being stubborn and get a walker/ wheel chair when allowed outside ,what are people going to think of me staggering around? ,will I get better and can I drive (cognitive bit okay ) sorry to ramble but very frustrated , scared and feeling kind of lost I know my other half is the same but does not want to let it show. Oh and I also feel guilty for being like this and not being a mom and wife.

10 Replies

  • Everbodys fnd symptoms differ. Over time you will find out what to avoid, balancing exercise and resting. Listening to your body. Some people change there diets. Some use meds and some dont. I wish I could offer concrete info, but im sort of In same situation as you. Research it as much ad possible I suppose. Mine started near 10 years ago. It went sort of dormant for 4 to 5 yrs, now its coming back with avengance. Have you ever had surgery? That seems to be a persistent cause. Good luck. Keep me posted if you uncover info.

  • Hiya! Sorry to hear of this. I think we all can relate to this. I saw a Neurologist and spent copius amounts on MRA for him to conclude it was FND and said now go and see your GP. They seem to do this a lot with FND as they dont have the answers. I have a few symptoms and drop attacks with dissociative disorder, most days il have a drop attack which fortunately doesn't make me hit the ground but drops me to my knees and then I recover. It happens a lot in shopping centres. But what ive found helps FND is being cooled. FND doesn't like Heat! . So at night the fan is on me during sleep and I keep cool. I feel like a universal soldier :) . So don't get hot and keep cool. Don't avoid it altogether, just be smarter with heat. You might find a Tens Machine might help you, but go and see an Osteopath and he will be able to help you. Also consider a good pillow to give you a deep sleep. This has also helped me aswell. My pillow is a Gel Serta Iseries Contour Pillow. AWESOME! Sorry I cant help anymore, but you are not alone. Health Unlocked has good members and we help eachother! :)

  • Hi where do you put the TENS machine on your body?

  • Were you given the website It explains functional neurological disorder symptoms. Theres also a fb group called functional neurological/conversion disorder/ For sufferers from all over the world. Where abouts in the UK are you? Im in scotland. I think the best way to deal with it is firstly dont panic, secondly, look at your lifestyle, you have 2 autistic children and whether we believe we cope or mot - we actually dont at some subconcious cellular level. I have two children also - both autistic and my son has cerebal palsy aswell. I used to think i could cope with everything, but it turns out the longer we supress it, one day or bodys say enough & give us crazy symptoms to shock us into slowing down and taking better care of ourselves. Youll hear alot of people say theyre not stressed ect and thats true for some, but not for the likes of you and I. In a way, its a good thing as we can identify with ease most of our triggers and quickly learn how to help ourselves. If you join the group on fb and post, i'll watch out for you and comment there aswell. Ive had 2 years of this before my diagnosis, but im now looking into a whole other area of problems which is our bodys lack of vitamins. Might sound cooky, but it turns out i have a low b12 count and the effects of a deficency in b12 mirror images most of my symtoms, so if you havent already got them, get your b12 & vit d & thyroid checked. Have you suffered from any gut problems? Ibs? Gastritis? X

  • Thanks for your replies I wasn't given any info when discharged and have spent a lot of time searching the internet for info. To answer Pinkangel31 questions I live in Worcestershire and all my bloods are fine and so are my scans but I am suffering gut problems, thinking back its been like a 6 month build up of minor symptoms that you would just normally ignore/ put down being under the weather ( gut, migraines ,muscle pains and tiredness ).I seem to be less shaky in the morning after a nights sleep and it gradually gets worse especially when tired power naps seem to help never power napped before but now I can sleep anywhere. Like you said I think my brain just said enough its gone faulty due to being over clocked and when the kids especially my little one who has ADHD as well starts to play up it makes my movements more difficult. To answer Lindy0421 I have had surgery.

  • It's quite eery reading people's posts, there is so many similarities. I was allways run off my feet and thinking I wasn't stressed . Started off with exhaustion , depression etc etc. like I said, I've suffered for years but not diagnosed. I ended up in hospital on life saving meds and steroids for malabsorption . Major gut and bowel problems. the list goes on and on and the symtoms just get greater and worse over time. Lost a lot of friends over the years as they have accused me of being on drugs, attention seeking etc etc. I go interstate to see a neurologist that specialises in FND. Mind you, my first actual visit with him is Tuesday the 10 th of March. Have been communicating over phone and email until now. If I learn of anything new or interesting, I will share with all.

  • Thanks for your reply been back in hospital again my speech went slurry getting better now gets worse when tired or anxious same as my walking which is no better also lost my appetite which is weird. Had full blood tests they came back fine even a chest x-ray to check for clots nothing found they said I could talk to a neuro doctor but they said it wouldn't do much I just had to " think myself better ".My mind wants to do all the things I did but my body is that of an 80 year old really frustrating don't quite know where to go from here.

  • Jenny, have a look at x

  • Hi, very sorry to hear of your FND, all of us on here have slight differences, probably what makes this illness all the more frustrating.

    My diagnosis came after a serious RTA and six years later after meds, hospital in stays and physiotherapy I have a reasonable active life ( apart from balance, short term memory loss etc ), having an understanding partner and neuro consultant helps obviously, and finding a way of relaxing helps a lot but difficult I know.

    I also discovered I needed supplements in b6 niacin and iron not sure about b12 though.

    Keep positive though, we are in this together !

  • Make sure you get tests for all of the above and also ask for a test for Gluten related disorder, since my daughter has gone gluten free she is having less tremors. Gluten can effect the brain.

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