Thankyou to you all for your posts, they have really helped me.
I was diagnosed with fnd last august, after feeling increasingly ill since the february before (initially CFS type symptoms). I was admitted to hospital when an ataxic gait with myclonic jerks kicked in, and then in a pattern very familiar to you all, all tests returned clear.
At the time I likened my legs to wearing Wallace and Gromits Wrong Trousers! They just didn't feel like my legs!
Anyhoo, I have now got my leg control back, although I waddle and still can't walk any distance before they stiffen and then spasms which move up my entire body (I use a wheelchair when out and about), and my jerks have continued. I also have balance problems.
I count my blessings though as I don't have pain like so many people here, so sending you hugs...must be tough.
My question is if any of you have vision problems?
I have noticed recently that I have problems looking to the edge if my vision, my eyes skip side to side (googling it, it looks like nystagmus), and when my eyes scan from side to side they move in a jerky way. It is much worse if I'm tired, and it triggers more body jerks when I do it. Reading text side to side also causes it. It is why, I think I can feel unwell and sick and weak, and jerks much worse when moving out and about because of the scanning motion your eyes have to do. So busy environments are particularly difficult.
My neuro appointment yesterday didnt pay any attention or test this yesterday (she has lost interest, as she is obviously not interested in fnd). In her defence though she has referred me to Dr Mark Edwards in London, and although I'm very grateful, I understand that it will take a long time to get through, and I am feeling desperate that my world seems to be closing down on me, as going anywhere is becoming increasingly stressful and difficult.
Sorry for such a long post, just hoping someone can relate, and maybe have any tactics that have worked for them?
Kaz x
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Kazandoz
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Yes, i have blurry vision in both eyes, and have problems with spatial awareness. My night blindness is awful I think I have nystagmus also, and took a video to show my neuro since it happens when I'm fatigued. Nystagmus isn't a functional symptom.
I don't believe in my FND diagnosis for several reasons. One it was made so quickly. Plus the neuro didn't care to hear about my non-motor symptoms, that are related to PD, like loss of smell, handwriting changes, etc. The neuro looked about 28, so I think he was a resident neuro. I couldnt find one website stating nystagmus is functional.
While i have read that an FND patient can also have organic neurological issues, I believe FND is wrong when that is the case.
The medical websites state nystagmus is related to disorders like MS, etc or neurological diseases.
I only took video of my eyes because I get pain in my eyes, can't moe them as fast as before, and I get dizzy looking down if I don't move my head. They're red and dry eveyday. The reduced blink rate is an indicator if PD, but tge problem with my eyes, and early balance issues fit with atypical PD.
While I can't tell you what to do, I am seeing a specialist in a few months. Someone who will take my symptoms seriously and who will hopefully exlude everything before saying FND. PD is one of the diseases that people are first labeled FND.
Good kuck and keep me posted if you learn anything.
Thanks again! I'm sorry that you have had such a frustrating time, we really are in their hands and its infuriating when you feel like they aren't listening or don't seem to care.
I had a lot of tests done last august, but my eyes are new, and i cant help but wonder if they've got it right. I presume the fnd specialists in london will check everything again though, to make sure it is fnd?
I see you are in the UK, so you have different healthcare policies than where I am, in the U.S. If what I read about the UK is true, with how you have to get referrals from your doctor, then you are more limited than me Here I was able to find a specialist in movement disorders who will take self-referrals. I will have to travel 7 hours, but it will be worth it.
Keep journaling your symptoms, and look into Patients Like Me website, where you can get your symptoms in a graph or chart.
While there may be legitimate FND/Psychogenic/Conversion cases, I think many people don't fit that category. If you are a woman, you are also taken less seriously, at least in the U.S. There are so many stories online about it.
Like I wrote before, there are so many people who were found out years later to have an organic vs functional illness. Be your own advocate, as best as you can in your country, like taking videos of your eyes, etc.
My blurry vision started last year, which is now constant. My red, dry eyes started months ago, but my dizziness and what I think is nystagmus is within the last month.
Sorry that you, and others here, are not being heard by doctorsand are frustrated. Believe me, I empathize.
Thankyou again... Good tip on the website too. I've been keeping a diary but its not very user friendly if i wanted to show a dr, so that site might be great. I started to keep one to find a pattern to worsening of symptoms, but the only theme I can find is that resting does me wonders! I'm obviously designed to need to sit on the sofa in front of the tele with a nice box of chocs all day :D!
Haha on rest and chocolates. Rest doesn't help me much though. You also could list your symptoms in an Excel spreadsheet tracking their consistency and when it happens.
Have you run across this site? neurosymptoms.org/visual-sy... It seems to be the go to site for FND in the U.K. A list of various symptoms possibly associated with the condition. There's a section on vision.
Thankyou, yes it's a good site, and in the uk it seems to be the first place they tell you to look when they decide its fnd. Some of my symptoms fit from that site, but some don't, and the nystagmus is one of the ones that doesn't?
In which case...the nystagmus MIGHT be unrelated to a FND diagnosis. It is possible you could have both, or neither. My gut reaction, from observing other folks with FND diagnoses is that you have both going on. Independently. It really seems to me as if everyone has more than one thing troubling them. Which could explain the wide variation in reported sets of symptoms. We're talking apple, oranges and things not in the fruit family all lumped together in one very confused and confusing bag.
Hi Kaz, I have vision problems too but more in the delayed reaction if I'm asked to move them and double vision! When I was referred to prof Edwards it was only 12 weeks so don't dispair! I'd also go for an eye test also to rule out any actual eye problems! My boots optiontiin was wonderful as she ruled out any eye problems so we know 100% it's neuro, however she said there's not harm her recommending me seeing eye specialist to see if they can recommend and excersises or stuff to help! Good luck and get that eye test xx
Thankyou for taking the time to respond! I'm so glad you had success with dr edwards! Thanks about the wise eye test tip. I did go to the opticians as initially i thought it I needed reading glasses...I've reached that age :)! But aparently I don't need them yet.
My dad had positional vertigo, and reckons I should get that checked out, as I also have balance and motion sickness issues (though no spinning thank goodness) and my eye movement can trigger this problem... Its just difficult to know whether to just try to ignore stuff and get on with life accepting its part of fnd or try to find the energy to fight for yet more appointments, trying to ignore the inner groans from the dr as all tests done last summer were clear, as far as they're concerned its not anything they can do anything about, or understand, and to go away now please!
I'm kind of hoping to just hold out for dr edwards team now, in the hope they will check everything there. Sorry, I dont mean to come across as negative, but you know what it can be like with some of these doctors
I always say.. new symptom.. or a change .. get it checked out, just because we have fnd does not mean we can't actually suffer from other virus , bugs, other conditions!! Plus you never know the next professional might be able to or willing to help , try new things 😀
Oops but trigger happy! Success .. well he's confirmed my diagnosis... referral to neuropsychologist to assist with the stress part (short story my son attempted suicide at school). But anxiety is now manageable but symptoms have progressed I have 10 areas of concern and last visit he said "yes it is the fnd". And offered to see if I can see his psychologist to work on cbt for when I get stuck ! Physical symptoms no therapy for just recommended I speak to mobility people for help! Thing is I'm not registered disabled or in receipt of PIP (disability payment support) so I can't access these things! A lovely person in a previous post of mine listed items you can buy that help with the physical side if things!! So I'd scroll through my posts and see if you can find it!! I find it's about figuring out what you can do, not giving up on things you love and enjoy (me my dog walking ) accommodating what you can no longer do, look at what's good in your life and try and keep positive!! At the end of the day I am blessed with living in a country where I wait but I can get help, I'm not dodging bullets or bombs in so many war torn countries, I actually have a choice in this... 1: give up give in let the fnd win or 2: kick ass and get on with life as best as I can! Yes some days no 1 is tempting but I opt for no 2 because I'm still breathing and if I fall apart so do my kids and I can't and won't let that happen.... so here's to a better day today, no sun but there's blossom on the tress and the birds are singing 😍😆😜😝😅😘
Hi, I got diagnosed with FND a year ago then ignored. I'm in uk also feel docs don't know what to do so just get rid of you. I'm now waiting to see the specialist who writes the websites my gp managed to get a referral to him.
For englishmumof2 I found out that you can contact your local council OT department and get an assessment for how you manage in the home. You can call them yourself but you will be seen faster if your gp contacts them. They will come out to you. I got a shower stool and am awaiting a kitchen stool as I can't stand and cook anymore. I also got referred by her to a neurophysio without having to go through neurology. I'm seeing this physio now. It's only 6 sessions I think but it's great to have someone tell you what to do or not do and how to manage physically. I'm hoping the consultant can help me with the brain fog side.
For Notinmyhead, I'm also not accepting my diagnosis although I have most of the symptoms I was initially told this was mild, people could work, I have had two OT assessments for work and been told I willl never work again when I'm in the prime of my life and was looking forward to moving up in my career. I was also told symptoms come and go. I have never had a break in 3 years from symptoms. They just go round in circles. I was only offered psychotherapy by neurology when I don't believe it's psychological and I said no. I think lack of help and physically going downhill with no help or advice could drive you crazy though but I'm not there yet. Also I was in an accident and the symptoms started a couple of hours after when I was in a good mood, waiting in emergency for tests but sure I was going to be cleared and sent home that night. I wasn't psychologically distressed or worrying about anything. I was actually comforting my friends and making jokes. But unfortunately it was more serious. But I don't believe you can have all the symptoms listed for FND and it can be psychological. I'd never heard of it and was getting more and more symptoms. I believe it's physical and the doctors just can't work it out because believe me I'm not someone to get sick and just accept it. Iv been fighting since iv had no help to get back to fitness but It has made me worse. Then I get more symptoms. That's why I'm happy to have the neurophysio input just now, it's validation.
in reply to
Armalia,
I can relate with you and understand your frustation. My symptoms don't come and go; they are consistent and getting worse. Even before finally seeing a doctor, I tried holistic things, but it has not changd my symptoms.
I read on forums how FND patients went ahead with psychological assessments and treatments only to be told there is no need for therapy. Tgen the psychologists sent them back to their doctors and later found to have an organic illness. So psychotherapy could work in your favor.
I think staying positive is vital, and I agree with the psychotherapy bit that you talk about Amallia... In my experience when Drs can't find anything physically wrong, their default is that you are nuts or depressed!
Does anyone else find like Amallia and me find that the more you fight it, the worse you get?
Pacing just doesn't seem to work, even when I am really careful and do it in a very structured way?
Hi Amallia, like you I was in a good place before I got sciatica and then spasms moved up eventually ending up in my head. My symptoms don't come and go they just get worse especially when I attend the few appointments I've had only to be repeatedly told they can't help me (too severe and complex) still waiting for more appointments to be assessed again in London hospital to see wether they can help me or not. My job finished, but finally with help from a charity that my new dr got for me I've got disability pip. It took over a year to finally get disability due to not being able to attend and being in seizure when they came to my house. My new dr although he admitted straight away he'd never heard of FND he would be happy to learn along with me. I don't think he's learnt much yet as apart from professor Edwards no other professional can help me. (Too severe and complex) for them to help me. Even nuero physios will no longer see me as they don't have the knowledge to help me, they too have wrote to professor Edwards to let him know their thoughts. Still waiting. Lisa
I was told it would come and go and people can work full time, I wish those people luck but that's not been my experience. It is all about how much you do as I used to be really fit and wanted to try using dumbbells again to build up arm strength although I was worried I'd drop them on my feet but that day I went to an appointment and then did one more task and that was just too much time outside. I got the wrong bus home due to I call it brain melt, and then both arms were failing and I struggled to get my key in the door to get home and was hurrying to settle and sit down before I totally lost power. My physio is trained in FND so she says if you think you can manage a 20 minute walk do 10 instead. So to anyone out there I would suggest getting a physio trained in FND. Even if they. Am just answer your questions. Iv tried to explain to someone who was insisting on me making an appointment that I can't do too many per week and I have to go to one then come home. That's all I can manage. People just don't get it. The FND hope website says that FND can be as debilitating as MS or Parkinson's, it's a shame the health industry also doesn't know or understand it. I recently had a really horrible experience in hospital where my whole body was in spasm and I couldn't use my hands and arms and the nurses were yelling at me and being really nasty and on discharge made me walk out the ward to leave and refused me a wheelchair to the taxi, even though I had FND in my notes they didn't bother to look it up or ask me about it. More education needs to be done all over the NHS anyway not sure about other countries but I lived overseas where this began and have since emailed several docs who were involved in my care when I got the diagnosis and they all replied and said they would research as it is not known there.
Thanks everyone I also agree it's easy to get a psych diagnosis when doctors or psychologists don't know what they are doing. I used to work within the health profession and said you could basically read the DSM-V, the psychiatric bible and diagnose every person you know with some psychiatric illness because the symptoms can be broad ranging.
When I was diagnosed with brain tumor they said my eyes were making the same movement. They did some therapy on me before surgery that they said was inner ear crystals.... not sure if that helps and I apologize I don't remember the name of the treatment..
Acquired nystagmus can be caused by a disease (multiple sclerosis, brain tumor, diabetic neuropathy), an accident (head injury), or a neurological problem (side effect of a medication). Hyperventilation, a flashing light in front of one eye, nicotine and even vibrations have been known to cause nystagmus in rare cases.
Some acquired nystagmuses can be treated with medications or surgeries.
Yes, before anyone reading this panics, nystagmus can be triggered by allsorts of things, and I have now read that rarely the cause is never found, so I'm not flapping yet :)! I also had a clear full brain and spine scan last summer.
Seaotter (love the name!), I think what you are talking about is called BPPV, where the crystals in the inner ear (labyrinth) that help you work which way is up, get dislodged. I only know as my dad has Menieres, and also had BPPV. They did the Epley Maneuver on him which moved the crystals and cured it...I presume this is what they did for you?
I've got the docs tonight (as diabetic levels are all over the place, i reckon from adrenaline peaking when I try to walk) and I think I'll bring this up too, as after thinking about it, with my dads history, something simple like this might end up being the cause of my eye movement?
Hahaha! Only just calmed the inner anger animal in me to post a response. Suffice to say I am NEVER seeing that rude dismissive and cold hearted doctor again! Completely disinterested and didn't even look at my eyes! Anyhoo, thankyou all, and englishmumof2, as I thought about what you said about the eye test, and so went back to the optician again who has confirmed nystagmus, and we have bypassed the silly horrible doc to get a referral to the opthalmologist, and more tests because of it...yaaay :)!
So my point of this post is to not give up, and accept fnd diagnosis is responsible for everything, even when, as we all do, you encounter uncaring, disinterested, burnt out, ignorant drs along the way, who make you feel stupid for wasting their time with another symptom (oh and I definitely need to grow some rhino skin!)
Anyway, rant over...Im off to finish making my voodoo doll of a certain horrible doctor :D! Just kidding!
Amongst a whole load of other things I am experiencing eye problems as well. My eyes appear to be jittering fast from side to side which makes me feel sick and dizzy. Also at night time I've temporarily lost the sight in my right eye. An optician has said I don't have nystagmus but do have some tremor in there and may have some loss of blood supply, so recommending further specialist tests on my eyes. It's not pleasant what we go through, but so far the suggestion is it's all part of the FND
Any ideas anyone or has anyone had anything confirmed from neuros etc?
Sorry you are having problems too. Just thought I'd do a follow up, for my own particular experience, incase it's helpful - though we are all so different....
So the Opthalmologist was only looking for eye disease - of which I have none, he says I should not have been referred to him in the first place and should have been sent back to the neurologist, so back I poddled to her...a few months later of course! She was very dismissive, didn't check my eyes, has said there is nothing more she can do for me, but did at least refer me on to London, and then discharged me (in other words I'm unfortunately not really interested in FND, I can't therefore support you anymore, I'm very (understandably) busy, so go away now please, and someone else can deal with you in around another years time...sigh)
Without any support whatsoever (even physio), I wasn't happy, so asked for a second opinion neurologist...always a good idea if you feel you need it I think.
To talk specifically about the eyes, I had researched so much in terms of eye movement problems and FND, but of course sometimes you need that magic medical terminology to bring up the right online research! In this case - for me personally, the terminology I needed to look up was...
Conversion Spasm.
If you are interested or suffering, this is a non-organic (ie functional) disorder that can occur, can mimic nystagmus, so can be just another fun symptom of FND.
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