Hi I'm suzanne from the UK, I was diagnosed with fnd last week after five years of begging go to find what is wrong with me.
I'm due an mri next month but neurologist is convinced it's fnd.
My doctor however is convinced it's anxiety symptoms and has put me on dosulepin .she basically doesn't believe there's anything wrong with me.
So after five years I wish I'd never gone to the neurologist as I've still got no health support anyway.
Just an idea, if your gp thinks it's anxiety related then ask for CBT. See how it affects you and your symptoms. At least you would get something useful from it, how to cope better with pain, keeping positive etc, even if it has no difference whatsoever to the symptoms. I don't understand why the first port of call is anti depressants.
Your neurologist is being thorough by looking at the causes of your symptoms, 5 years is a long time to not know why and where your symptoms are present.
What are your main symptoms?
Hi my name is Martin, I've been diagnosed with fnd, my neurologist said it was down to anxiety I've never suffered from anxiety in my life, he thinks now it may be due to a bad accident I had a couple of years ago. I have had the opposite a good understanding doctor, a half decent neurologist, I struggle on a daily basis walking and now I'm classed as disabled, I've managed to get pip, and a blue badge, but I get frustrated at times as know one can tell me if I'm going to improve, I've had two mri one showed a couple of grey areas,(normal) the other I'm waiting for the results, I'm seeing another neurologist in March for a second opinion, my thoughts are Suzanne is try and see another doctor for another opinion I know it's not easy but try to stay positive, we are all here to talk to and support you.
If the neuro says they think it's FND what that probably means is they are quite happy it is unlikely to be anything structural - MS, MND, etc. Which is something to be thankful for.
It also means that they don't quite know what is causing your problems - for FND read 'something has gone haywire with your brain but our knowledge is not sufficiently advanced at this stage in medical history to tell you why or to be able to offer any kind of 'fix' that we can say is 100% likely to work'.
What the docs can do is try their best to treat the symptoms you are experiencing, and as Danslatete posted above CBT is helpful for that - managing a long term chronic condition (whatever it is and whatever it is called) has particular challenges, and is very likely to impact on all elements of your health, not just the physical, but also the mental and emotional.
Sometimes you will be offered meds that seem to have an underlying ulterior motive - tricyclic antidepressants when you go in asking for pain relief, a common example. But don't be put off by that - they do work for many people to treat neuro pain, just one of those sideways discoveries that GPs have found in practice. It doesn't have to mean your doctor thinks you are depressed. Unfortunately it doesn't mean the meds will help you either - it is all a rather inexact science.
Don't underestimate the impact that anxiety will have on your physical symptoms though. Many people who have written research papers about the HPA axis are convinced that in some of us our 'flight or fight' mechanism is activated, it might be by a single traumatic event, or a gradual build up of stresses among which a mini stress suddenly breaks the camel's back, and the HPA then gets stuck, sending the body into a kind of hormonal vortex. And most of the control of the hormonal system is by way of chemical triggers which are set off somehow by electrical impulses in the brain. It is not by any means fully understood how a glitch in such systems seems to have such far - reaching consequences.
The key thing is to own your condition (whatever the label) and seek out and try out whatever help is available, trusting that some things will produce benefits, if not all, and to continue to hope that the researchers will come up with something a bit more concrete sometime soon.
Hopefully any neuro giving you that diagnosis will have directed you to Prof Stone's 'neurosymptoms.org' website. If not, do Google and take a look.
And, as Martin says, keep asking for a further opinion, keep asking 'why?', keep positive, and keep on keeping in touch with others who 'get it'. That isn't to say any of that will make it go away, but it might help shed light on how to live within (and even stretch) the envelope of your condition as best as you can until themiracle we are all waiting for finally arrives.
Hi my name is Jenny I was diagnosed with FND last Feb after being rushed to hospital with a suspected stroke and I suffer from anxiety as well. If you have physical problems ask you doctor to be referred to O/T and pyhsio ( helped me a lot) and as Danslatete said ask for CBT , they also run FND groups there is one at the Barberry in Birmingham but there must be others.
Unfortunalty as I have found once FND is diagnosed you have to fight for everything but there is support you just have to keep asking for it.
Excellent messages everyone... My name is cheryl, I was diagnosed with FND About 4 years ago. I love in Utah in the US. We have one group of docs here that can diagnose it, but can't treat it. It is not fun to have something that seems to be a medical mystery most of the time given that you will find most docs don't have a clue of what to do with people with FND. Just don't give up, keep trying to get help. I have been so blessed to find an amazing therapist that I hope and pray will be able to help me through this. It has taken many tries to find her. Don't settle, keep searching, and DONT GIVE UP!!! You can make it through this. It may turn your life upside down, but if you have a positive attitude and great people who are going through the same things on this sight, it will give you strenght to keep fighting. Best of luck and prayers your way.
Sorry lilymai, I had a chuckle reading your story. Not because it's funny but exactly the same as me. 5 years it took. And yes my doctors cocky look saying its anxiety. Remember this all too well. I've done the rounds with neurologists and found gold. Dr James Leyden in south Australia. He is wanting to see more support and research just like us. He's compassionate, patient and just can't fault him. My silver lining.
Another thing, most neurologists see you once, diagnose you and tell you that's it, follow up with GP. No, not my neurologist, he wants to follow up every 3 months until further notice .
hello lindy,
my name is leon , we live in christchurch nz, my fiancee was diagnosed with this f.n.d last july, after having her lunch at work she got off her stool and reached down to pick up her coffee cup and then something went ping in her back she felt it straight away , ever since then nothing but problems , 3weeks in chch public hospital 3 weeks at burwood unit to learn to walk again , the 1st nite it happend she got pins 2needles in both legs and they were numb,. 3 mri scans later and still nothing , seen u are just across the ditch , so to speak , i wonder next time u visit your neurologist who seems better than anybody we have here , could you ask him a question , my fiancee has a problem her knee's give out from underneath her at any given time , no warning or anything , she doesn't black out or anything like that , she can go 1 week or 1 1/2 weeks without a fall or sometimes like past few days she has had 4 falls, 2 in one day ... i would be greatfull if you could do this on my behalf , altho we don't know each other , i guess we are the same as you , been frustrated on not getting anwser's .. or even if he had a web site or email address if that is possible ,,,,hope to hear from you in the future ,
cheer's leon
Hi Suzanne,
I'm Johanna from the us. Have been dealing with symptoms for over 6 years. Have had MR"'s 3 Nerve Conduction/EMG tests, Visual Evoked Potential etc. Just had a Single Fiber EMG. First diagnosis was MS, then last year Myasthenia Gravis, also "it's all in your head." Some positive test results, but not enough to make a conclusive diagnosis. Recent diagnosis FND from a kind and supportive neurologist. Some medical drs have been somewhat supportive, but most neurologists not This has been awful. It has progressed, with more symptoms, ruined my health, affected my looks and life to the point where I am basically unable to be active. I have sought psychological counseling, evaluations with a psychologist and lastly a psychiatrist. Their evaluations were negative for an emotional basis for my symptoms. My present neurologist stated that" my condition is not from stress or some underlying emotional issue. For this I am thankful.
I am suggesting that you consider Adrenal Fatigue. I was diagnosed with Fibromyalgia in 2000, used alternative therapies and started a yoga practice, with condition resolved in about a year...with no return until 2003 when my naturopath diagnosed me with severe adrenal fatigue. There are recommendations on-line for Alternative therapies are not covered by insurance and I am not able to pursue at this time. I plan to purchase supplements and hopefully will eventually improve. The medical conundrum has been extremely stressful, with dismissive and at times, disrespectful drs, who instead of acknowledging that western medicine doesn't have all of the answers, pointed the finger to me.
I do hear and understand what you are experiencing. I am so sorry. I too persisted. in spite of bad treatment to find answers and treatment to prevent progression and assist with pain and other symptoms.
At present I am trying to locate a support group near where I live.
I do hope you find a physician who will be of support and help you.
Johanna
Hi Johanna,
I found your post very interesting as a couple of years ago I was told by hospital doctors that my blood cortisol levels were borderline for addisons disease but after the test to either confirm this or rule it out I was told it wasn't. I was diagnosed with fnd last year. But I do think back to this and have thought often about going to a naturopath and trying alternative medicine as no doubt I have adrenal fatigue if my levels are borderline for addisons. But like you cost is holding me back at the moment but I would like to persue this very soon. I was wondering what are your main symptoms?
Best wishes
Louise
Hi Louise,
First I will share how and when all of this started over 6 years ago this past November..
After exposure to a powerful neuro-toxin bug spray in November of 2009, I became violently ill with projectile vomiting, same from bowels, and a severe crown centered headache. This lasted overnght,,tehn left me with fatigue. Had a scheduled eye exam about a week later. Dr said, from what he saw in my eyes, like I had had a stroke. Diagnosed me with double vision and prism lenses to correct this. I also began to have, in addition to the fatigue, walking, coordination problems, dropping items from my hands. By January I was experiencing incontinence, went to a urologist, who said I think you have MS. He was so sure, that he commented, "even if the tests are negative, I'm sure you have MS." He told me to contact MS Society for support and to understand what what happening with my body. When i returned for my follow-up and test results 3 months later, he told me he didn't think I had MS. Didn't know what i had...and so began the medical conundrum of seeking answers with more testing and the beginning of being treated like a 'head case." I sought professional counseling to explore that possibility. No basis was found for a psychosomatic response by my body. A second opinion resulted in the neurologist suggesting somatic or psychological causation for my illness. Unfortunately this 'filter"followed me as I continued to worsen and seek help...even tho I sought opinions from other therapists, a psychologist and a psychiatrist. All confirmed no evidence of a psychological basis for these symptoms.
In 2015 , I was diagnosed with Myasthenia Gravis by an ER doc who was so disrespectful, that I asked to leave the ER.. He did, however, prescribe Mestinon. I literally could not hold my head upright and was having sever shortness of breath,swallowing problems and difficulty walking or doing anything. Follow-up by the neurologist disputed this diagnosis. The stress of dealing with the medical professionals caused me to step back over and over to give myself a break from the negative attitudes, which I found distressing and non-productive to my well-being....adding to the challenges that had resulted from this illness.
I had had test results over the course of the past 6 years and 3 months that indicated problems. It has been so confusing to me that something very serious has affected my brain, CNS and my life, without clear answers as to a diagnosis.. And, the progression over the course of this long period without improvements. Prior to the neuro-toxin exposure, I was active, had a full and satisfying life with many interests and friends.
This illness has progressed. I have right sided weakness in arm and leg with numbness, tingling muscle aches, nerve pain, burning, and tightness, as if a band is around my arm and leg. Also heaviness, dragging right leg, foot drop, difficulty going up stairs, getting up out of a chair. Do experience a tightness in my chest, with pain when the weakness increases. About 9 months ago, I began to similar symptoms on left side, although right side remains worse than the left side. Difficulty swallowing, chewing, drooling, shortness of breath on exertion, muscle spasticity, stiffness in hands, arms , legs, feet, increased muscle weakness on exertion, a gravelly voice, double vision has worsened, increased incontinence with bladder and bowel. I have had periods when I am not able to walk.
In the past several months, my activities have decreased due to weakness, fatigue and being easily over stimulated by too much activity going on around me when out somewhere, too much noise, too many people I am at present, having issues with managing in my home with cooking , laundry, the daily activities and responsibilities of living. I find that any exertion and expenditure of energy results in shortness of breath with all of the symptoms being exacerbated.
I take some comfort in the recent diagnosis of FND and a supportive, kind, neurologist who acknowledges that the medical community does not have all of the answers. Who also expressed frustration about the need for more effective treatments that will provide more help.. After such a stressful and non-productive journey of seeking answers, with so many dead ends, at lease now, I can use my energy for exploring what may help me to have a better quality of life.
I am a trained holistic health practitioner. In the past I had a private practice. Have used alternative therapies, herbal remedies, homeopathy;used Reiki, Body Talk, Neuro--vascuar therapies, essential oils, and others to give some support to my system. Also used adrenal supplements, in addition to other supplements to give my immune system support. I have used these over the course of the past 6 years, with no significant results, but am willing to try again. I meditate, and use acupressure. I also have dental fillings which are leaching mercury into my system. It is very costly to have them removed and must be done by a holistic dentist, using safe and correct procedures.
I hope sharing my story of this illness will be of help. Will be happy to give support and be of assistance as I can.
What are your symptoms Louise and how long have you been dealing with this?
Hi Johanna,
your story sounds just like mine. I have almost all of the same symptoms as you except for the bowel incontinence. I have some bladder incontinence but I don't know how much of that is down to childbirth rather than fnd. The shortness of breath is my worst symptom and ever so scary. I have bad balance issues and lightheadedness, nerve pain, burning, tingling, pins and needles, muscle spasms especially in neck, upper back and shoulders, neck weakness, face pain, left sided weakness, chest heaviness, twitching in muscles, dropping things. Any slight exertion leaves me winded especially walking up stairs in our house. I too struggle with too much sensory input e.g noise lights crowds etc. All of my symptoms started suddenly after a virus when I was 14 weeks pregnant with my daughter, before this I was fit and healthy. I too have battled with the endless doctors who doubted me and put it all down to anxiety and stress but after being referred to a specialist no evidence of any anxiety could be found as a cause for all of my symptoms. I received my fnd diagnosis quite early on in the illness which was good in some ways but I still doubted this and like you i tried to seek more help but after being looked at like you are a fake time and time again then I gave up with the health professionals and once my daughter was born I tried alternative therapies, chiropractor, massage, suppliments but not a lot made much difference. My neurologist referred me to a neurophysio and for cbt but none of these helped either. So I was hoping to try a naturopath but cost has stopped me so far. But if you said not many natural remidies helped you then maybe it will be a waste of money. Anyway it's lovely talking to you, I live in the uk.
I would be very interested in finding out more about alternative treatment that may help.
Best wishes to you
Louise xx
Louise,
Thank you for your response. I live in the US, in Virginia. I moved back to Virginia last June due to the terrible medical care out there..it is still 'frontier medicine" in Montana, and I have more friends here that can help and give support.
The swallowing problems and shortness of breath are scary. And limiting too as far as any activity. Also waking up at night or during a nap, choking. Or choking on food and water. Or getting tired chewing food. Limb heaviness, eye, facial pain, chilling, crawling sensation in my right calf, cold hands, muscle spasticity, balance issues, coordination issues, slurring my words, finding words when very fatigued, gravelly voice, dropping things, can no longer pick up heavy items, even a cup or glass of water is too heavy, muscle jerkiness, double vision, the burning, pins and needles, muscle aching, so much of what you describe. I have fallen as my knees, or ankles give way. It is difficult to stand for very long. I also get chest pains with the shortness of breath. Why? Because the muscle are weak and are having to work harder for respiration! That is easy to figure out.
I have been examined and evaluated by a psychologist , therapists, and a psychiatrist with no evidence of a psychological basis for my symptoms. Until the diagnosis of FND on January 14th, their opinions has not stopped my being passed off, exposed to rude and disrespectful and dismissive treatment by many medical professionals. That, along with my own frustrations and not knowing after so long, how to proceed, and my concerns about how this was progressing, has made this truly awful to deal with. Being treated as if I were faking or exaggerating my symptoms is a terrible thing to put any patient though. "It's all in your head"...how demeaning!
Today I am more symptomatic.... with increased pain, muscle tightness, taking a few steps, then having to stop, rest, take a few more and so on.. A friend took me to the laundromat, which is too much for me..with the noise, lights and having to stand. On days like this, i do get scared and more frustrated with not having treatment that will help me. The last test I had was a Single Fiber EMG, which was to rule out or confirm Myasthenia Gravis. It ruled out MG. I had been diagnosed with MG a year ago last September and was prescribed Mestinion. A medication for MG. The neurologist who diagnosed me with FND is continuing to prescribe the Mestinon.
I am wondering today, and I posed this question to my neurologist, "How can I improve or have something even close to a normal quality of life when I have no energy or as soon as I use any energy, I worsen and then have to lie down and sleep? And, trying throughout the past 6 years and 3 months, everything I could possibly do to improve, to get well? He had no answer for that except "don't give up, educate yourself about this disorder, see what others are doing." And, acknowledged the docs don't know enough, yet." He expressed frustration and support. I am grateful for that.
In 2010 I was examined by a urologist, who performed some tests, then told me he thought I had MS, and that my bladder problems were neurological, not due to a physical issue, such as prolapsed bladder. While living in Montana, I was tested and examined by another urologist who concurred with the first urologist. He sent me to a neuro-urologist, who also performed tests and a physical examination. He concurred with the other urologists and told me I needed uro-dynamic testing. I have an appt in February with my urologist in Virginia, where i am now living, to discuss scheduling these test. The bladder, and in the past year and a half, now include bowel issues, in my estimation, are part of this condition. My symptom shave progressed. especially in the past year and an half, even more so in the past 8 or 9 months. I am having to curtail all activities.
It is helpful to me to put all of this down..to be heard and understood. I do have wonderful friends. However they have been as puzzled, confused and astounded that this has happened. I have heard, how can this be, so and so went to the doctor and was easily diagnosed and not mistreated by any docs? Implying I must be the problem.
So, thank you Louise for listening and understanding. I will let you know what is helpful to me that I haven't already tried. And, that I also hear you and do understand.
Sending positive and caring thoughts and prayers.
Johanna
Thank you Johanna for your reply. I completely understand what you are going through and as you can see I think it's a similar story with how most of us have been treat by the professionals who look down on us and think we are trying to faking or malingering. I just wish they could spend one day in our shoes and see how much we really suffer. Although I have had almost every one of the symptoms you describe and some others too, I am not as bad today as I was 2 years ago. 2 years ago I spent nearly a year in and out of hospital, collapsing daily, having to be helped to go to the toilet or to shower etc. I spent weeks in bed unable to move around the house but today 2 years on luckily I have improved, I am still symptomatic everyday moment of every day but I am now more able. Some days are a struggle to do much around the house but other days I manage to go out go shopping etc. I stopped driving when I became unwell but i have started driving again on good days. I am not brave enough to go far now but I will pick my children up from school or pop to the shops. On bad days I won't touch the car as it is not safe for me and my family or for other road users as I suffer bad dizzy spells etc. Don't ever give up hope, these conditions wax and wane. I think I have accepted now that this may be my way of life for the forseeable future. I hate it but I won't give up looking for ways I can improve my symptoms.
Best wishes to you Johanna, my email address is louise79.laj@gmail.com if ever you want to chat. I completely understand how you feel.
Speak soon
Louise
Louise,
Again, thank you for your reply and sharing your experiences and what you have done to help yourself. I am more hopeful now as I read so many stories like mine. I have felt so alone, scared at times, frustrated and angry too. I kept telling the docs, now matter what this is, I will deal with it..I just have to know, and get some effective treatments.
I am hopeful that I will be able to drive again and have a higher, more satisfying quality of life. I own't give up either!
I will send you and e-mail later tonight. Thanks so much Louise!
Johanna
I feel the same
Specialist in FND
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