Stay Positive, Keep moving, and don't give up, there is life in being diagnosed with FND.

[Ireene]

Hi there. I was recently diagnosed with FND on 2/26/17. The symptoms left me like I had a stroke. It took me 7 weeks to learn to walk, talk and hold a spoon/cup again. My advice to all is: Keep exercising, keep a positive attitude, have a sense of humor, I know its hard, but it helps throughout our days in dealing with this nuisance. Also, do brain strengthening exercises, paint, go to the gym, water pool walking is the best and has helped me gain my strength and balance. Don't give up, I guarantee all of you we can still enjoy life with FND. Also, deck out your cane and walker, it will surely brighten your spirits.

[Bracken123]

Well done ireene , my son was diagnosed with fnd over 2 years ago , it affected him from getting out of his wheelchair , as soon as he tried to stand ,he fell , shaking ,terrible headache s some days couldn't string a sentence together , etc ,after a long wait ,he got some phsio,and started going to the gym ,with determination ,he can now manage a few steps with his sticks , on his good days , he has a different outlook on life , has something to keep him positive,and looks forward to meeting people , I am speaking for my son,as I write this ,I am very proud of him ,shows determination can work .so to all of you out there with this terrible complaint ,try try, to keep positive,hope this is helpful .

[Hidden in reply to Bracken123]

Yes it takes a lot of coming to terms with nearly 12 months, then I was determined with a lot of love and help from my family, I can walk a little way with crutches, leaving the wheelchair behind, get active as you can, be positive, I go to the gym twice a week now which I never thought would happen

and that helps enormously, keep positive people it can be done.

[Ireene in reply to Hidden]

MART67 - Good for you! Its a struggle some days, but all of us can do it. High-Five to you for hitting the gym twice a week. It will help anyone enormously and I work out everyday, doing something. Even when I have a setback and it takes me back to my walker, I exercise my hands with the putty clay and small weights. It really helps with my tremors too!

[Hidden in reply to Ireene]

Exercise is the best cure, take your time and don't rush, and it's good for the mind which = positivity

HEY RESULT hey it may not be a cure but it certainly makes you feel GOOD!!!!!!!!!!!!

[Ireene in reply to Hidden]

I do have to agree, it has made me so much stronger, and when I get setbacks I am able to bounce back even stronger.

[Hidden in reply to Ireene]

I never thought I would ever go to a gym, never been before lol, but it's the best tablet out there hun, I feel so positive, it's got me out of my wheelchair and I can walk aided with knee supports which are a massive help and crutches, not a great distance but one step further than I could 12 months ago, and a great loving family especially my mum and wife, give up on the medical professionals they haven't got a clue,don't wear a knee support it won't help you, you will get muscle wasteage yeah even when I go to the gym twice a week. 🙄🙄🙄

[Ireene in reply to Hidden]

Well, that is amazing! WOW, from wheelchair to a walking aid, that is awesome. It really does help. The medical professionals, especially the neurologist have no clue, my physicians know this is real and are supportive, because they see the condition that I am in, however, staying strong and eating healthier has helped me a lot. This FND is new to me so I am still learning what triggers these seizures. Its a true blessing to have a circle of supportive family and friends.

[Hidden in reply to Ireene]

I've being trying for 2and half years trying to find the trigger. And I can honestly say I haven't found one yet, let's be honest is there one, only one I could think of is tiredness or stress.

[Ireene in reply to Hidden]

I agree, exercise is a great cure, and its good for the mind, body and soul....keep it up!

[Ireene in reply to Hidden]

Mart67 - That is so awesome, I am so proud of you. To each and everyone responding, I wish that I was by each of your sides just rooting you on and helping you throughout this journey. We all can do this, and we all must stay positive and strong, because this has a huge impact on our recovery. There are days we may have setbacks, but we will all bounce back up!

[Ireene in reply to Bracken123]

That is amazing. FND is a nuisance and a struggle in all of our lives, but we can't stop living, at least I refuse to. My cane is my best friend and my walker is my bestest friend where ever I go, and give your son a HIGH-FIVE from me. Way to go!

[Hidden]

As above, worked for me.

[Ireene]

Well, my seizures just happen,. I can be at the grocery store shopping and then all of a sudden, I just can't walk. I do know large crowds with a lot of talking has caused a seizure, numbers do, tiredness will cause my leg to give out (no idea why) but its not going to stop me from what I love to do. I am on my 15th 5K right now, and there are days I can do it and there are days that I can't but It just takes me longer and my legs have become stronger. For a person who has never enjoyed running, it really helps me in many ways.

[123lisa]

Here here well said !!

[Hidden]

Eighteen months from the start of her illness, and sixteen from the FND dx, my daughter who has had most symptoms mentioned on these pages and more, appears to have recovered? I hope I'm not tempting fate - hence the tentative 'appears to' rather than a more definite 'has'. Best to all of you out there!

[Ireene in reply to Hidden]

Gypsi - I think that is great! How long did she have FND and how long did it take for your daughter to recover?

[Hidden in reply to Ireene]

It's hard for me to judge when her symptoms stopped being alarming and started easing up. The usual suspects, MS, stroke, ALS, Parkinson's, were all at some point considered and eliminated, hemiplegic migraine has not been entirely eliminated but the genetic testing did not confirm it, some of the neurological manifestations have not, I don't think, completely disappeared, such as a weakness in one arm for example, possibly some of the visual problems. I'd say she's been gradually getting better rather than dramatically recovering from one day to the next, and that this change started being noticeable and credible after about a year from the dx. By the way, she had always suffered from migraines but the total physical meltdown came with what might have been a particularly severe migraine with every sign and symptom of aura in the book. There has possibly been a psychological aspect to the FND, in the shape of an, to put it mildly, unequal relationship. She has now regained her freedom, or almost, from both. A year ago she would not have been able to walk a hundred meters. Now she takes the dogs out for at least an hour every day. Ireene, if you have any concrete questions do ask and I will be happy to tell you what I can to the best of my (second-hand) ability.

Best wishes, and bon courage. X

[Ireene in reply to Hidden]

Gypsi - thank you for sharing your daughter's story and high-five to you for being her advocate. I, too, was not able to walk, talk or hold a cup, and I am SO proud as to how far your daughter has come. Please tell her not to give up and to do many core and strengthening exercises. I can attest that having this disorder does not stop our lives. I am SO happy she can now take her fogs out on walks everyday, that is so wonderful to hear! It is a battle, but a battle that each of us can overcome. It may take us down, but we can all get back up!

[AjaStar in reply to Hidden]

Hi I was hoping you would give us an update on how she’s doing and what treatment helped her the most thanks

[Hidden in reply to AjaStar]

I can hardly believe it's been so long. AjaStar, update, gladly. The neurologist settled the matter of diagnosis: despite no evidence from the genetic testing, it definitely is HM. She is on: birth control and Botox for the migraine, plus neurofen+ in extreme times, blood thinner to help prevent stroke and apparently stave off aura, although this seems to be contested, a medium dose of an antidepressant, magnesium (also in bath) for pain in the legs. Some other vitamins from the B and D group. She used to work free lance, now has a contract and goes out of the house every morning. You see, I really am not convinced about this whole FND business. Stress plays an enormous role in the functioning of the body and I think it was stress, and fear, and her mental make-up that caused her to develop the extreme physical response in the form of periodical partial or complete paralysis, debilitating weakness, shooting pains, seizures, persistent tremor, numbness, facial drooping, vision disturbances of various kinds, allodynia. She even had the 'wrong' response to the Babinski test. All of that was then brushed off (at a very reputable European hospital no less) with the FND stamp, and a leaflet to read up on it, and goodbye. I have grave reservations about this diagnosis. There is a psychosomatic element in it, certainly. I myself 'only' suffer from extreme anxiety; even that can derail your body at times. As an adolescent, she developed an eating disorder, self-harmed, hallucinated, (some of which, we now know, was either anorexia or migraine aura related), and got diagnosed with schizophrenia. It was either a wrong diagnosis, which we strongly suspect especially as she never had a proper psychosis, which the clever medical staff assured us was just round the corner, or she did and recovered completely, as apparently happens in as many as 25% of all cases. For the next twenty years she was absolutely fine in that department but the migraine got progressively more frequent and severe. In short, to answer your question, I don't know what especially made her get better but suspect the knowledge that she did have an illness with a name (HM) had a lot to do with it. Botox seems to have made a big difference, the antidepressant undoubtedly helps her stay calm which in turn, etc etc. Yoga, music, dancing all help. Good friends and getting rid of an overbearing partner would have played a role. She does not have an easy life - she's technically a single mother of three children who all have their problems - but she seems, fingers crossed, to be fully in charge of her life again for now.

All the best, G.

[AjaStar in reply to Hidden]

Wow this is amazing to hear! She went through so much. I have similar symptoms and one doctor had questioned if my functional stroke was a migraine aura, but symptoms kept changing they had no idea what was wrong with me even after so many tests. So the Botox helped her headaches? And why did they prescribe birth control? I do notice my symptoms worsen right before and during my period. This is all very informative, since this is an old post maybe you should write a new one to spread the word. We are always searching for success stories because it gives the rest of us who are really struggling, hope. Thank you so much 😊

[ukmsmi4]

Whilst I generally agree with what you say I would add one word of caution.

Yes it's absolutely true that for most people exercise is an excellent way to build strength and stamina in a battle to regain at least some level of health.

However, in my opinion there is no such thing as FND, it's not a disease in and of itself. Instead it's a misdiagnosis of something else.

I have M.E. which is recognised by the WHO as a neurological condition. Recent research is leading down the path of multisystemic but including neurological issues.

Hence I went to a neurologist when my spasms, twitches and jerks started going into overdrive (these are a common feature in ME). After a very simple, very perfunctory 5 minute examination involving a few really technical tests like 'follow my finger' he declared I have FND. Yet it is known that the neurological symptoms involved in ME don't present in the same way as most neurological symptoms and can only be found by in depth testing including MRI scans.

However, as said I have ME and that condition involves among many other things a broken energy production system which if pushed in any small way will make my condition worse. I have proven this to be correct with my own attempts at exercise, but it is also well documented. For some very severely affected ME patients that 'exercise' can simply be trying to sit up and due to the affects of the cardinal symptom of post exertional malaise that can mean any or all symptoms worsen 24-48 hours later.

Chronic Fatigue Syndrome is as it says a syndrome. The definition of a syndrome is nothing more than a set of medical signs and symptoms that are correlated with each other, it is not a condition in and of itself. Much like Chronic Fatigue Syndrome is misdiagnosis of either ME or a multitude of other conditions sharing many similar symptoms, FND is also a misdiagnosis for something else.

As with any other functional disorder, the assumption is (despite what they tell us) that the symptoms are all in our head. It is part of the current drive by the medical establishment to classify all such conditions as the somatic classification MUS (medically unexplained symptoms) and thereby put the onus onto the patients as if it is all in our heads. Again that is exactly what it says, doctors are so far unable to find what is wrong with you. That DOES NOT mean it is all in your head. It just means they haven't found it yet, they don't understand.

So the point I am making is that whilst yes, exercise is generally a very good thing to promote for most people, we need to be careful and consider just what it is that is really wrong with us. If it is ME, and potentially a few other conditions that have this issue, then all attempts at conventional exercise will undoubtedly make you worse.

Sorry but I don't believe in FND as being an acceptable diagnosis. And I have learnt by bitter experience the harmful affects that exercise has had on me. It pushed me from being a moderate case of ME to a severe one. I went from being around 75% housebound, very rarely bedbound to now being 95% housebound, often bedbound (currently in my sixth consecutive week of being bedbound), and on those few occasions when I do make it out the front door I can only do so in a wheelchair pushed by someone else.

As I say, generally good advice, but just a word of caution.

Hugs to all, Margaret. xxx

[Ireene in reply to ukmsmi4]

Hi Margaret: I have no idea what ME is, but I do agree with you. To me, FND is an unknown placebo diagnosis however, I know my symptoms are real. I will never go see a neurologist again, unless they are familiar with FND, until then, I will do whatever I can to take care of me and my body. Also, all of us have to because cautious in exercising, because I know for me, if I over do it, I can't walk, my hand starts tremoring, I can't talk and start stuttering. So I know when I am pushing my limit or close to it, because my body does tell me. Bless you, Margaret as we are all going through a journey of our own and being supportive to one another is a true blessing. Thank you for sharing your story and please let me know what ME entails.

[Renwick1 in reply to ukmsmi4]

Hi margret as I am new to this site and have stumbled across what you posted 2 months ago . Excellent what you wrote and I to am very sceptical of my fnd diagnosis as when I exercise or come into contact with certain strong smelling substances it can be 2-3 days before you notice the effect and especially if you push the body to hard you don't just go back a notch you slide of the scale . I would love to hear more from you as you seem to suffer as I do. I was also told I had multi chemical sensitivity. If you want I can give email address or phone number

[AjaStar in reply to ukmsmi4]

Have u improved? Can you walk more now or even exercise ?

[Hidden]

Wow I just might deck my walker out I call it AID