Probable FND, I disagree with diagnosis

I just can't get my head round any of it i'm a runner and still running pretty fit just have muscle issues . in my mid 40 Also run my own company . Basically looked at my mental health history from over 20 years ago and made a judgement on me . And from what i work out, because I because don't fit into any of boxes. Labeled me as probably FND. I was told i tested negative on all test which wrong . The Neurologist , were supposed to run a gene test and give me a MRI which didn't . Only did basic blood test emg study which lasted less 10 minutes on area not affected , Tested my heart which good , i knew this anyway am runner. The spirometry test was bad result . I am asthmatic nothing didn't expect . The neuro exam which did show balance problem, and a dropped foot . I do have a positive babinski reflex . And only test that was negative was EMG study , my blood test came back as low in b-9 and iron. I also had my friend accompany me to the hospital appointments she upset as me . I also have pernicious anemia i had for last 3 years . Won't go into list of virus i picked up last 3 years be here all day my immune system not keep virus out . Worst one was EBV . I am so upset over everything at the stage .Thinking of paying for a private scan and Gene test which i can't afford and will have to use credit cards even then don't know if i have enough money on them , because i know not FND this . Neurologist close my case after 2 appointments, nhs gp as said if i the scan or gene test show something up i can't be treated on NHS even though them refusing to do tests . Catch 22 damned if do damned if don't . in fact refused to sign form for private mri scan . i need to see a private gp get a formed signed for a scan and arrange a gene test . The whole thing as set my well controlled depression off . I really do feel like stopping and refusing all treatment for everything health wise . Can't talk to anyone about it especially my family i feel ashamed my body stuffed . Hence rant and does anyone know how to go about getting cheap private test done , any advice be welcomed . Thanks if read this .

31 Replies

oldestnewest
  • Welcome abroad my friend! I do feel for you and you need to go to the National Hospital in Queen's Square, London. Don't delay. They specialise in rare diseases/disorders. I have a not dissimilar story. I struggled with my diagnosis of FND. I was convinced I have a neurological disease but all blood tests came back normal. Normal blood tests plus I now know, my ex-neurologist diagnoses on the basis of probability. Very rare diseases would never be picked up, we could all self-diagnose on the basis of probability, save ourselves a small fortune, get it wrong and detiorate. If you have a gut feeling you have an an illness despite what your GP and neurologist tell you and even blood tests - standard ones are pretty useless evidently - you must fight. I've been sent to a psychiatrist during all of this to address anxiety. Neurological conditions are going to cause anxiety and even more so when you know you are physically ill and not getting the appropriate tests. I was convinced and my uncle, a neurologist, was convinced too when I described the symptoms that I have neuropathy. He couldn't believe I hadn't had nerve conduction studies done and when I asked my neurologist for them he told me I didn't need them and that it was extremely unlikely I have a neurological disease. I got a second opinion, he doubted there was anything but did recommend NCS. Eventually, through my own persistence and determination and explaining my predicament to support staff in Neurophysiology, I was given a date and guess what the readings found "an impressive array" of problems which the consultant carrying out the studies says are suggestive of chronic highly suggestive of Chronic Inflammmatory Demyelinating Polyneuropathy and possible DADs. My neuro when he rang me the next day asked if I want treatment - of course I want treatment - this ghastly thing is progressive and has progressed considerably over the last for months during all this fobbing off and some nerves are not responding at all in my hands. Again, my neuro says it was unlikely I'd have anything wrong because CIDP normally displays weakness and I don't have weakness. My neuro also says I don't need further tests now yet my uncle says I need urgent further tests. Luckily and without asking, my neuro gave me all my consultancy costs back so I'm using them to see a top man for my condition at the National next week. Luckily I had got my GP to refer me to the National under the NHS some months ago because I couldn't accept the diagnosis of FND. Soon I have an NHS appointment there too but you do have to wait - queues are long but then it's a centre of medical excellence. Because they specialise in rare neurological diseases and have leading consultants from around the world I think they are used to people like you and me and they genuinely want to help. Some friends of mine who have a friend who suffers with a severe form of epilepsy (not seizures) has had excellent treatment there and so recommended I get myself there and my uncle tells me it's the best place in the world. They do thorough investigations and, yes, do genetic testing there (on the NHS) and I think that is what I am having shortly. Please get your GP to refer you today but google the specialist you think you need first and get your GP to refer you to that person otherwise you could find you have to join another NHS queue all over again when the referral the GP has made is to the wrong specialist but an appointment with someone there is better than an appointment with no-one. All I can say is you have to be very proactive when you have a rare disorder/disease. The fact that your EMG results are not normal means you need further investigation. My ex-consultant says my nerves will regenerate with treatment. Let's hope he is right this time. Happy to help further if I can. It's exhausting having an illness abs having to be your own advocate and support and advice from others gets you through it. Let me know how you get on.

    Olivia

  • Thank you so much Olivia for all information it will really help , great knowing that other people understand what it like .

  • Do get yourself checked. I'm now waiting for a date for IVIg which I will have to have regularly for the rest of my life or so I understand. Olivia

  • Hello

    Are you able to tell us the name of the specialist neurologist that you see?saw at The National. Thank you Jane

  • Hello Jane. I googled demyelinating neuropathy specialists at The National and have an appointment with Dr Michael Lunn on Wednesday at The National. This is private (£320) but I can't wait too much longer. So much time has been wasted (my GP diagnosed Raynaulds in August despite the heat and neurological symptoms, and you know about the FND misdiagnosis). From my experience seeing a local neurologist is a false economy (cost me £600 in total plus £590 for physiotherapy plus £90 for CBT. £600 was for the first consultant (2 appointments) and a second opinion from another who at least recommended NCS although he couldn't see anything wrong)). These so called neurological checks they do on a couch are utterly useless and my consultant (we've parted company) said neuropathy always accompanies weakness. My uncle who's a neurologist, says those tests they do on their couch are useless and my former consultant was wrong to tell me that neuropathy accompanies weakness. I'm proof it doesn't. We always assume these people know their stuff and they don't so spending a bit more and going to the top person is money extremely well spent if you can find it (I'm pretty much cleared out after my experience). I have an NHS appointment at The National too later this month but again I had to get my GP to refer me as I had a bad feeling about my symptoms and the FND diagnosis. They have very advanced equipment and specialise in rare disorders, carry out genetic testing etc. at The National. The secretaries are extremely helpful too so find the right person and get your GP to refer you to them on the NHS and in the meantime see them privately if you can because waiting lists are long but there's a good reason for that. The reason I'm seeing Dr Lunn is because I want to know if he thinks I should proceed with IVIg on Friday or wait for tests to be done at The National before I can get IVIg there. Apparently I will probably need it for the rest of my life every couple of months. As of 19th December I'm over to them whatever happens. Really happy to help you if I can.

    Olivia

  • Thank you for that, I do hope your appointments go well and that you find some appropriate help

    Jane

  • You are entitled to request a second opinion or more. Insist your GP refer you to another hospitals neurological department and refuse to take no for an answer

  • Thank you might just do that but i was told not entitled to a second opinion on NHS . i try will pay for one if have to .

  • You have no legal right but you can ask and doctors do allow them.

    I have asked and am being sent for one. You just need to explain why you want one. My GP told me they would be happy to send me for more than one if necessary.

  • Hi there, I totally sympathise as I was a full time nurse and mother of 3 and as soon as I turned 42 everything went down hill. My muscles twitch, they seize up when I try to walk. I have muscle fatigue and mental fatigue to the max at the moment. I'm on some meds but feel as though I have just been left in a corner to rot. I was medically retired from my post 2 yrs ago. Since then I have been almost house bound. I do not believe the FND diagnosis, all of my symptoms can be related solely to MS but as there was no sign of demylination in the brain. MS has been ruled out. I am so sure this is not FND but have no idea as to what it can be. I have given up going to my GO as I feel they will not help any further. I hope you find the answers you need really soon xx

  • Thank you and hope you get answer two , Same here had a tumour removed its was benign, but was start of this nightmare . One thing after another , because i run i been refusing all meds except for my inhalers, b12 injections and iron tables , i only use pain relief as last resort , basically when hits a 9 i just hammer them .

  • Hi there,

    Since you have had a tumour removed, your symptoms would rather suggest a brain injury as a result of tumour compressing surrounding nerves/ surgery. You do need that scan to rule it out. All surgery carries risks - I know the docs don't like to admit that their surgery may have caused an unavoidable issue. Babinski reflex present - definitely something wrong somewhere between your brain and spine. All websites you will find agree on this.

    theemtspot.com/2012/06/27/u...

    How soon after surgery did your issues begin - ? If you can afford it, a private physiotherapist may be able to write a supportive assessment to GP . I went this route as GP's would not listen/examine me or refer at first x

  • PS What part of the brain was the tumour located in ? x

  • Sorry should of said when wrote post tumour wasn't in my brain . then all the immune system issues started to where i am now .with all muscle issues.

  • Fnd can be caused by trauma from in your child hood but also it doesn't have to be physiological. I've been ill for the last year and they keep putting it down to probably fnd but haven't diagnosed me. If I was you & you can get a second opinion then do it x

  • Thank you will do . hope you get your answers too . Pleased i posted as felt so alone in dealing with this.

  • Hi all Welcome to the merry go round of NHS and we don't know !!

    As all the posts above been there and done it MRI,S X rays on the brain and neck, Nerve conduction, Genetic testing , lumber punch, 20 + blood counts for everything from HIV to Fabreys disease, endoscopy procedure, full spinal MRI , Amyloid test which included fat removal for analysis, 7 neurologists , 2 rheumatologists , 2 anesthetists 2 physiotherapists, a pain management program, 3 psychotherapists and a partridge in a pear tree!!

    Until I had a private consultation with a Dr Stone from Edinburgh University via my solicitors , the worlds leading neurologist for FND within three hours he explained in human speech my issues the probable cause and a logical explanation for FND , like many I was at my wits end until I met him he has an amazing website which might help people understand there condition better neurosymptoms.org/

    One of the biggest signs for FND is if the symptoms are not constant and are intermittent with stress of activity , this shows that there is no major damage to the nerves or CNS but more of a misfiring of said nerves.

    Hope this site helps

  • This web site my neuroist gave me before saying we closing your case . Thank you will have another look at it. I know now it not that i just feel it.

  • Thank you everyone for the advice and input first time in a long while don't feel alone . Sports and running only thing been keeping me sane . There are day's more walking than running happens, run walk for a few miles then walking takes over completely , last 11 months gone from 9 minute mile to 13 minute miles and learned to bounce really well , as bloody foot keep catch the ground at wrong times lose my balance and fall don't even need to be outside . My upper arms have full on weakness been there constantly for over year. My work i need body working , and no help from anyone when self employed . No sick days or starve and become homeless , if cant work as not entitled to any help, another catch 22 . Again thank you all i'ld take all on board keep try to fight my cause .

  • Hi

    I don't know which country you are in but in the UK if you are unemployed, especially with a medical condition, then you are entitled to government benefits. You should look at ESA and PIP (replacing Disability Living Allowance). Worth checking them out. Sorry can't offer any detailed advice but again in the UK you should check out Citizens Advice Bureau.

    If you know all this sorry I don't mean to tell you stuff you already know about.

    Lou

  • This FND seems to be the latest craze amongst neuros, who can't find anything wrong, via the textbook, so it's all psychosomatic. Did you know there are 6,900 rare disease recorded? I actually had one neuro say to me, "I don't know what's wrong with you, I'm too busy to find out. Maybe somebody else would have the time". Then writes to my doctor suggesting functional. I'm 75 years of age. The probabilities that I have a neurological illness are high. I don't want go to my death never knowing the answer and heart failure will be written as cause of death. So, neuros can't be bothered to delve further and this FND is a quick get out. Dr Stone has a lot to answer for with his crackpot ideas. True, it might be an accurate diagnosis for some, but what of the rest of us genuine sufferers who are misdiagnosed? Left to rot in a corner. How very cruel and callous of the medical profession of whom we turn to for help. I managed to get my second opinion which will be on Friday. I don't hold out much hope. I have, dysarthria, dysphagia, face paralysis, breathlessness, breath shudder and low back pain, coupled with camptocormia, diagnosed two years ago, which leaves me unable to walk. I've been in touch, over the net, with a professor of geriatrics in Canada, who is convinced I have myasthenia. I will probably have to fly to Canadato get the condition confirmed, if this neuro on Friday, also, thinks it's all in my head. Humbug.

  • Good luck and i hope you you get answers and help, limbo a horrible place when know it not what there Trying to diagnose you with .

  • I know that there is a very small group of people who have been diagnosed with FND who have been very unimpressed with Dr Stone and I'm quite curious as to why. Why are you saying that 'Dr Stone has a lot to answer for with his crackpot ideas.'

    This isn't the first time I've heard such strong words used for Dr Stone. Is it because some doctors in the UK still follow his earlier work from a time before he started researching and treating FND and still claim to be following Dr Stone's outdated ideas? Is it a personality clash? Did he misdiagnose or mistreat you?

    Have you checked out his website neurosyptoms.org ? Have you watched any of the numerous YouTube videos where he explains his tests? One of those tests was first discovered after WW1 (I think, or it might have been an even earlier war) where it was first noticed that returning soldiers with shell shock had an unusual response to this test.

    The other website about FND is fhdhope.org . Have you checked it out? Was it helpful or not?

  • Many people with FND have a vitamin B12 deficiency, even when their blood tests are in the lower half of the normal range. When they start taking B12, a lot of their nerve and muscle issues are significantly reduced, although some permanent damage may have occurred.

    The other essential supplement for many FND people is magnesium. Everyone's requirements differ significantly. I don't think there is a normal range. My requirements vary from 3 to 8 huge tablets a day, depending on whether I'm having a bad day or a good day. Once I start having seizures or irritable nerves, I have to hit the Magnesium bottle - hard!

    I knew I had muscle problems, but it took a persistent doctor who believes in magnesium to force me to take the higher doses. Whenever I supplement, it's usually only 1 per day, so when he had me taking up to 3 a day and I was still getting significant muscle damage, tearing, cramping, ropes forming that take weeks to go away, extreme muscle fatigue, jerking movements, etc, I was ready to give up on magnesium, telling him that it wasn't working. I just need to keep increasing the dose, 'until you get diarrhoea, then back off just a little bit', he said. Finally I got it, I understood what he was saying, and I starting getting good results...so long as I hit take at least 3 a day for maintenance, and rapidly increase the dose at the first sign of any strain on my muscles (e.g. any physical activity...which he told me significantly increases my requirements...almost exponentially, he said).

    All my blood tests come back normal, even if i don't take any for a day.

    Someone mentioned Dr Stone (above). He has two 'positive tests' for FND/FMD, and if you have the reaction he expects, then you have it. Period. However, not everyone has that typical FND reaction because their symptoms don't affect the areas he tests. I have no idea how good he is with non-FND patients who have gone to him after being told they have FND. I do know that FND hasn't always been his specialty within neurology, however he has acquired a excellent reputation with many FND people due to his pioneering work with FND.

  • I do i had positive test for pernicious anemia 3 years ago , and been receiving injection every 3 months that last 8 weeks at most , and was retested last month before my injection and confirmed. Another positive result , ( also iron deficient and vitamin d and b9 deficient ) PA which triggered EBV, and had a positive test result for and that caused chronic Fatigue, and couple other virus , probable FDN Diagnosis for a month , see my gp this week to get paper work put in place for private scans. as think FDN is wrong . think my muscle and nerve issues are linked some how to tumour i had in my chest it was benign . This when all the above started,

  • It sounds like you need to ask for your B12 injections every 6 weeks, because your nerves and muscles could be being damaged in the 3rd month after your last injection. I react badly to injections and don't have pernicious anaemia, however if I stop taking B12 tablets daily I very quickly start having visual disturbances, with large black shapes (I call them black butterflies due to their shape) flickering in my vision first thing in the morning and sometimes during my nightly wanderings.

    Also check to see how your body reacts to magnesium. As I've mentioned in this thread, even though my magnesiums levels are normal in blood tests, I need at least 3 big tablets a day, and if I have irritable nerves, muscle fatigue, spasms, seizures etc, I immediately start taking more Magnesium, up to around 8 tablets a day. If the symptoms persist after that, I have a bath with the recommended dose (off the packet) of epsom salts, which are very high in magnesium.

    (Warning: don't take a bath without constant supervision if you have seizures where you lose consciousness. A young lady in one of the CD/FND groups I belong to drowned a few years ago from passing out in the bath and her father only checking her every 20 minutes or so.)

    If your muscles don't get enough magnesium, one of their main sources of food (along with B12), they move jerkily, are very weak, very tired, fatigued, or have spasms, tight muscle ropes that aren't easily massaged out (in fact, that's one of the best signs that you need more magnesium, if your muscles have turned into tight painful ropes that can be felt under your skin.

    If your nerves don't get enough magnesium they become very irritable, making the muscles twitch, irritable or sore. You often feel crawling under the skin, and have all kinds of other interruptions to the nerves and nervous system, including inside your brain.

  • Hi I had my first attack nearly 3 years ago. I was living in NY so had very good Drs private insurance. It looked like and acted like a stroke but no brain damage. I saw several stroke specialist and top neurologist, psychologists and psychiatrists .... had all the tests you could get done... several CT several MRI's tonnes of bloods, physiology the day after the attack.... no one picked up the FND..... here 2 years later had a similar attack in hertfordshire. Taken to a and e after 8 hrs of testing and at 3 am they admitted me. Stroke specialist basically told me I was faking it .. he even forced my leg that wouldn't push down so hard he tore a leg muscle and I screamed tgevward down 😢. He never came back! In comes a lady she talks to me does tonnes of tests and says ' if MRI is clear you have FND. Writes down the website and reassures me I'm not going crazy or making it up.. at this time I was willing to be admitted to psych ward as a crazy person.... So I'm just saying with all the money and top Drs in NY they couldn't find what was wrong as they had never seen or heard of FND my lucky break was a neuro who just happened to have come across FND before! So I don't blame our Drs as they don't know everything and can't know everything! I've seen Prof Edwards in London and his team who confirmed my diagnosis! Now seen neuropsych who agreed with the FND and mild depression (son tried to commit suicide etc so if I wasn't mildly depressed I'd say I was not right ).

  • Keep searching for answers if you don't feel like you fit in the FND category. Hell, I think truly few suffer from FND and that alone is also suffering, but doctors and medicine have yet to explain several other neuro type disorders. They want you diagnosed and labeled.

    I was diagnosed with a gastroparesis (paralyzed stomach muscles) last year, had severe chronic back, hip and neck pain for years and only (27). I had an injury to my femur in Feb of 2016, which left me recovering for months. While in PT I developed a leg tremor that comes and goes. Several doctors later, emg work-ups, mri of hip, back and femur all came back negative. So I was stuffed in the fnd category. Finally, I was referred to a Physical Medicine and Rehabilitation doctor within Mayo Clinic. Turns out all these leg tremors are due a chronic dislocated SI joint in my pelvis!! This chronic dislocation causes the buzzing, tremoring and other pain related issues. Funny thing is my gastroenterologist could not tell me why I have gastroparesis, but when I get realigned at pt I have stomach flare ups, solidifying my thoughts that both my stomach issues and back pain set in around the same time!

    Stay persistent with your doctors!

  • Thank you to all those who replied to my original post about my unimpressive views about FND. Well, my symptoms were not pyschosomatic. I have been diagnosed with a muscular dystrophy which is affecting the bulbar region of my brain. Thanks to an air headed neuro who first suggested I had FND, I have spent months in ill health without a diagnosis or help. I'm still poorly, but have learnt to "manage" my symptoms and, at last, my GP now believes me rather than the wrong diagnosis. We know when our bodies are sick, don't let a doctor tell you differently.

  • Caprice123.

    Wow. That is a paragraph I will never forget. I never got around to your original post as I am just now getting bearings on this site. However, after 23 years of symptoms and now facing serious decline, I want you to know what a profound effect you have had on me. I do not know about the disease you have and I sure hope you can get some medical attention to help, but like you, I refuse to believe that the body is not sick. Thank you for the awareness.

    I have to attend FND conference in Atlanta because one of my daughters has this diagnosis as well as me. It has torn me apart to watch her try to fight through this without help.

    Would you mind, if I added to a list of anonymous questions compiled from this forum where I ask about the life consequences of neurologist misdiagnosing serious disease by using the FND label without having performed thorough diagnostic investigations to rule out all other causes? I would like to cite the diagnosis you have now been given - all anonymous on white paper.

    I will report back any response I get assuming I can find a pulse in the room. So angry now. I wish you only the very best.

    Thank you.

    Dan Jennings / Seattle

    Not a moderator. Origin of tag unknown

  • Caprice,

    That is wonderful that you have your diagnosis. I agree with your statement about us knowing our bodies. Good luck to you! Sorry for late reply, but I just joined.

You may also like...