I first tip my hat to all of you for continued interaction with much gratitude to cgarff, angelite, nurmihusa, Margaret, Vivienne, ronwyn, Ryan82, malalatete, Tony and Kim and seaotter2020 and so many others. The fire builds.
I will now be vague on purpose about my activities.
One letter has been issued addressing the ethical dilemma presented by proposing treatment approaches for a diagnosis which is not grounded in science.
A second letter has been issued to a member of the scientific community asking about physiologic possibilities to explain certain neurologic deficits found in FND.
A third inquiry has been made of the research division of a nationwide provider of medical care to find out if they have conducted or participated in studies on FND and its scientific cause. I had not been able to locate any such studies in a preliminary review of their site materials nor have I found any direct sub specialty for diagnosing and treating our disease. They have over ten million members.
This is called probing. We have to gather our intelligence.
These three pieces of correspondence will give you an idea of how we might engage the medical world regarding our disease. It will be no longer sufficient for us to communicate amongst ourselves to get help. We have to field a team.
What we will quickly find out is that we need numbers. We are going to have to find out how many are suffering worldwide from this vague diagnosis and get them united so we can exert some influence and pressure as a group.
It is going to be like coming face to face with a rattlesnake in the woods. Neither one of us will be able to back down so we better know how we are going to play it through.
The only other option is to throw a ton of money at it. My appetite for lottery tickets gave out long ago.
Hoping for a good health day for you all. Contact me anytime.
Dan / Seattle
25 Replies
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My friends.
To add to my post above, I want to also thank lisa-anne and englishmumof2 and cathys20 for all of their special insights. They have brought a lot of meaning to all of this for me. I will remember more as I go along. Bear with me. I am old and could not even sell ice cream from a cart. So forgive me if I have not paid proper tribute. You all are special in my heart. Now I remember andyglasgow, sunshineali. I am truly losing it folks.
Hope you are doing well and I must say I'm amazed at how you work to find answers like myself my guess is you won't stop either and I applord you 🤗🤗 Loke you I also wonder how many of us world wide suffer from FND or neurological symptoms with no current cause. I put my hand up to help in anyway possible to help with finding out how many there is so just let me know what I need to do on my part to help ..My neuro who diagnosed me said he knew I had FND due to the fact that it was mostly my left side affected such as my arm weakness and I walk with a limp now although I do have symptoms on my right they are mostly pins and needles and sensitivity to touch things , but I do have slurred speech , memory loss and pore eye sight . But when I truly look at my symptoms I guess I have suffered from big illness since I was young , like I had glandular fever, hepitis A , ruptured appendix , stomach ulcers from heliobactor virus, high grade CIN 3 cervical , and had a mastoidectomy to remove a cholesteatoma and I also have a taci cardi heart beat so I guess if I look in context maybe there are all interconnected some how I believe .. oh I also have arthritis in my spine which causes syatica I could probably go on and on lol ..Anyway not shaw if any of this helps but I'm here to help in anyway I can so let me know glad to put my hand up 🤗🤗Rhank you for the mention 😜Your FND friend for life Ronwyn
It is 6:30a.m. here in Seattle. I poured my coffee and sat down to listen to you. I was not planning on fighting back tears but now I am after listening to your life of hard fought medical battles. We will face your trial through FND diagnosis together. We are friends for life.
I remember from previous posts how much you want to be there for your family. That is true for me too. I can not and will not forget you.
The inquiry that I made of a large nationwide medical provider regarding efforts being made by their research division into FND and its potential scientific cause produced a reply before I ended my day. The kind but short answer was they were not aware of any research efforts on this subject. The provider has over ten million members that they serve. I will make broader inquiries of that organization today to ask the question " Why Not ?"
In thinking this morning about how to identify the population of those who suffer these symptoms worldwide, I developed one idea that I now ask for your input.
You and I have a distaste for the name Functional Neurologic Disorder. Would we be better off to ask people the question:
"Do you have or have you been told you have neurologic symptoms that can not be explained?"
May be that we just avoid naming it altogether? Would that bring us the largest number of sufferers possible to include those who have not gotten this dreadful diagnosis label yet?
I would appreciate your thoughts on this idea or how to improve it.
I want to set up a clearinghouse for people to get basic information. For that I do need a name. Only thought that has come up this early Thursday is the acronym N-SICK. It would stand for Neurologic Symptoms Information Center Kiosk. I know it is corny sounding but remember I am just an old country boy.
You can see I need a lot of help! Ideas appreciated Ronwyn.
Smile a little today. Take care of yourself a lot today.
Your friend in Seattle - where it us not raining today!
Oh Tony... you will pay for that one my friend. You were supposed to say " cure-ologist.". At least that is why I slipped you that twenty dollar bill in your Easter card which I have not bought yet.
OK. Now I am laughing. Time to go gather the eggs from out back so I can fix breakfast.
Love you all , you keep me going on days when I've had enough!! Currently still nursing my badly burnt hand!! And I keep thinking its still Monday.... what's that about 😆😜😝
Oh Dam I didn't mean to make you upset and don't be I'm not I'm acutely thankful that I have had such a roller coaster ride lol realy I have so much knowleadge to be able to share and help others who struggle in life staying positive is my moto even on my bad days I always see the light at the end of the tunnel and I always say god only gives the strongest of peoples the worst he can cause he knows that we don't give up we keep fighting no matter what 😇 I believe everything happens for a reason and I'm just a messenger realy or a helping hand .. Bow as for the name FND I say it should be called Ammune Functional Dissorder cause if everything is not working correctly it has to have something to do with our whole body starting with our ammune system maybe there was damage done at an early age that was fixed and it was the beginning of our roller coaster ride .,
And yes I'm smiling Dan I always do I'm one person who believes in only the positive and believe with all my heart that we will all of us will get better treatment and a cure for this unknown name lol illness ..
Also as a medium/ clairvoyant myself I always joke to everyone saying I'm only sick cause I pick up everyone's energy hahahah good an bad . So if I'm not positive how can I tell everyone else to be positive it starts with me . Rather than focus on what I can't change look for the good that comes from it for me I have made new life long friends all around the world , I'm helping to have us heard I'm also helping to make a change in how we get treated these are all positive things in my eyes I don't like to focus on anything negative as it will only cause me stress which we all know does not help us .
Ok I've lost myself now in my post or maybe I'm just getting tired to I will end it on this everyone of you are amazing keep looking for the positive in things and although right now you may feel like it's the end of the world turn it around and see that you are alive to see another day another day to spend with family and friends you are all unique and beautiful and certainly you are all stronger than you think .
T.K yes I think Dan is also a neurologist under cover hahah
Keep smiling everyone and most of all shine bright ❤️️💟💖😇🙏
Could never be upset with you looking out for all of us. Not a neurologist. If was, I would have put an end to this mess long ago. Thanks for my dose of inspiration. Off to tutor my third grader at the elementary school down the street. You are the best. And Tony thought he was! Laughing...
Yes I have heard that to funny enough lol but thought it was just me glad someone else has heard it to .. 😇🙏😇🙏 I do have to agree to as I believe it's from working with the energy field and having to raise mine to do so ultras my own body in the process . I'm currently studying Reki for this reason to help keep me from loosing my energy in the hope I won't get so sick ❤️️💟💖💖
Dear dan in England I'm don't have medical insurance, as a home carer in the community I had to pay for my car etc to do my job, I was only offered a pension through the government scheme is I now have no pension either if I don't get back to work. All of us with FND prognosis have ended up with it with all the different symptoms to different degrees through lots of different reasons. Some of us have been healthy, happy and merrily going on with life until 1 thing altered mine was pain through sciatica and slightly bent jaw being straightened but as I was bullied in the past at work my dr refused to listen to my pain and said I was depressed and anxiety. I wasn't I was in agony and left to deal with it. 1 nuerologist who we paid to see said my pain had been left to run riot and had formed its own entity, he kindly on his knees apologised for the NHS letting me down and gave me the brain nerve block for free. My point is wether we have been ill in past or not we have all ended up where we are today through lack of care, understanding and in some cases sheer ignorance. As no one can see our pain although my chiropractor kept saying he had never seen anyone come in his practice in so much pain before my dr still ignored this. If you have broken bones or cancer or something recognised you get help and pain relief. If it's your brain causing pain no one believes you. We have all been subject to the disbelief, ignorance and arrogance from professionals and it way past time to be recognised that what we have is real and could be helped if professional just listened to us, none of us want to live this existence in dreadful pain day in day out. Even my own mother said well some people handle pain better then others, that really made me feel useless. I given birth and that was pain but not endless pain for months and then offer you pain relief to give birth, once you have the FND diagnosed, I have been told nothing will help you so basically go home and suffer preferably in silence. My dogs have been treated at the vets better then I have with NHS and I have thought in past when in so much pain if my partner would take me to the vets, when in that much pain I thought if they put me down at least I wouldn't suffer anymore. It's a hidden illness that is just ignored when we need real help. Your amazing by still struggling through your pain to help all of us. Great love to you and yours. Lisa-Anne. 🤗🤗🤗😊😊❤️❤️❤️💕💕
in reply to
Lisa-anne.
You speak pure truth. I know you are meant to stand with me and this community as you are professional carer who dedicated life and your own well being to help others. You are such an admired soul because your struggle towers above so many and you were abandoned by society in your time of great need.
I need you to stay on team. Very powerful when it finally revealed to others that someone like you in such deep pain and yet fights to tell world "I am still here!". Your trials and endurance to be shouted across the land so that help can finally clear a path to reach you.
Do not leave me, your loved ones or this community without making a statement of facts. Can only change minds with facts and how you have been mistreated stands out as example of what exactly went wrong with system. This is obvious fact and must be brought to light.
I do not know how yet, but I know that Lisa-anne's story will be woven in fabric of change for righting what had been so wrong for so long. Stay with us please. You are much needed.
Sometimes, I wish I were in England to yell and get you relief. I am not. God has me here for reason and I try to listen and do. It is hard because I do less than what I used to do for family and others. So I keep trying every day asking for guidance.
Then, Grace is given and I have the chance to hear from you. I am blessed and I want you to be here tomorrow writing and telling our story. It all will come out. I believe and have faith it will.
I spent a year or two with extreme pain from a shoulder injury (not FND, though many doctors/specialists thought it was). The only relief I could get was to sit in my recliner with pillows in exactly the right position to put tension onto a certain muscle behind my shoulder/arm. So I slept in that position for more than 200 nights in one year. I hated sleeping out in the lounge, but when the injury was bad, I couldn't lie down at all. The number of times even the recliner wasn't enough - I would pace the floor, unable to even sniffle due to the waves of pain that each breath caused.
I discovered that Epilim, low dose epilepsy medication, broke the pain/muscle contracting/pain cycle. At 200mg a day, it was really great. My doctor said that the normal epilepsy dose was 1200mg a day, so I could go up to that limit, but I only went up to 400 or perhaps 600mg a day when it was really bad. The down side was that it killed my short term memory, my ability to create new memories, and my ability to drive. The stupid car would get a mind of it's own, and try to drive off the road all the time, unlike other pain meds that just made me very woozy and nod off it i tried to drive. At least with them, the car stayed on the road lol! (Actually, I only ever drove while on either strong pain meds or epilim in emergencies.)
I prefer pain patches. They give an even dose, Panadol/Tylenol adds to it's beneficial effects and I don't get the troughs while hanging out for the next dose. I just can't put on a pain patch after taking Endone or Panadiene, because it makes me throw up.
About my shoulder - past tense now. It started as extremely painful and very tight muscles. I had minor injury while driving for 90 mins with my arm resting up on the windowsill. Anyway, it didn't heal, mostly because I needed massive doses of magnesium, but I didn't know that then. A very over-enthusiastic physiotherapist at the hospital massaged my shoulder so hard that she broke the little tiny joint under the top of the bra strap. She also caused another injury that had us all baffled.
I eventually discovered that if i tilted my head over to the left, then back to the centre, my right shoulder would suddenly drop about 3/4 inch. The whole triangle of shoulder, shoulder blade, arm, everything, would drop, which meant that my extremely tight muscles were pulled tightly over sharp edges of bones, all around the whole area. I ended up with 13 steroid injections into the sub-deltoid bursa, the bit that goes over the top of the tip of the shoulder.
Two years later, I was in bed, in pain, when I got an itch behind my shoulder/arm. So I rolled over to the point of almost falling out of bed, and wrapped my left arm under my my right armpit and up, pulling that vertical muscle downwards to catch that itch. Suddenly, I felt something move and just KNEW that I had fixed my shoulder, that it had all just gone back UP. I still don't understand the physics of how pulling down a muscle in the space between arm, armpit and shoulder can lift the whole shoulder triangle, but it does.
it doesn't always work, so I still need painkillers - about 3 times last year, instead of for 3 weeks a month. But you can see why my specialist thought it was FND related! None of it made/makes any sense whatsoever!
There is hope with pain, even extreme pain. My 88 year old father had 3 spinal fusions over the years...40 years later the metal pins aren't being held in place properly, so he was constantly in a huge amount of pain. They eventually cut the nerve that feeds back the pain messages from the spine. So even if he is in pain, he can't feel it. A tiny numb patch on his bottom is a very small price to pay for pain relief.
Thank you for your lovely reply Vivienne, the last 2 years have been a rollercoaster of pain, it pops up wherever it chooses, feels like broken bones, grating bones, all bottom teeth ache most of the day, much more but can't remember. My new dr has helped with different pain killers, a nuerologist also helped with different ones, morphine patches but unfortunately they didn't help with pain and the side effects were horrendous, my partner listed them every medication I took and I had to come off them. The nuerologist has said I have an acute aversion to medication. I take magnesium and B12 every day, but rely on tramadol and Diazepan when in severe pain. The lack of sleep is really getting to me now though, there is just nothing to help me sleep for more then2 hours at a time. I tried 7 Diazepan once but it made no difference at all. I think I have seizures in my sleep which wake me and feel ill and in pain. Hate the thought of going to bed to feel this every night. A knock out pill would be heaven but nothing works. I can have the greater occipital nerve block once more in my lifetime so I'll wait until things get too bad again. Thank you for thinking of me. Lisa 😳 3am now and plucking up courage to go to bed.
Thank you Dan for all your support and kind words, I sit here night after night until the early hours of the morning dreading going to bed, to start the pain cycle again for another day but reading your words means a lot, I'm not suffering alone, just wish I could get some decent sleep in the last 2 years. I used to work nights and days as a carer but never felt alone at night as I do now. And I got paid to be awake, bonus, heh heh. Off to bed now as hopefully tired enough to sleep for a while. Much love to you and yours. 😴
Such a long conversation in my absence. Keep it up!
Ok. To get an idea of numbers, perhaps you could look up statistics on Somatoform Disorders. I think there's been a lot of research done over the decades about numbers - it's much higher than most people would ever suspect. Especially the number of doctors visits for undiagnosed symptoms that are presumed to be somatoform in nature.
As for the name...I think we focus way too much on the label of 'neurological'. To me, they are all just functional symptoms (i.e. mostly of not yet known medical/physical cause), and the Disorder is simply a 'Functional Disorder' as opposed to an Organic Disorder (i.e. it can be seen on imaging, in blood test results, etc).
This disorder seems to me to be very inclusive - and includes:
Functional Dystonia, Functional Movement Disorder, Functional Neurological Disorder,
NEAD, PNES,
Somatoform Disorders including Conversion Disorder, Somatisation Disorder (what I was labelled with)
In other words, symptoms can have a real medical cause (e.g. too many adrenaline and stress hormones in the body, not absorbing Vitamin B12 or Magnesium properly causing muscle and nerve damage, a whole host of other vitamins and / or minerals that are under or over represented in the body (e.g. too much copper!)), physical trauma to any system of the body, e.g. surgery, anaesthesia, brain injury (which can cause non epileptic seizures), too much or not enough of a whole variety of medications (e.g. SSRIs and SNRIs significantly increase my seizure rate). And then there's all the very rare diseases that are often misdiagnosed as FND (e.g. Marfans, Ehlers Danross, to name two off the top of my head.)
Bridget is a lot more aware of the extent of this than I am - she was diagnosed with something completely unrelated to FND at the same time she was setting up FNDHope Inc, and some of us wondered whether she would continue to support us after receiving her medical diagnosis. Thankfully she has continued to be our champion (see fndhope.org) and also check out the Rare Diseases database, available online).
Symptoms can be in ANY system of the body, not just neurological, including speech, swallowing, motility of the digestive system, cognitive function (or lack of it!), unexplained muscle movements or lack of them, ability to have sex, even hair loss has been identified as a FND symptom.
Demographics are NOT simply middle aged women who are bored with life, or teenagers who can't handle life. No way...it's way more complicated than that. We are grossly over-represented with Alpha type personalities, high achievers, very intelligent people, people constantly on the go (who burn out), good people in high stress jobs e.g. childcare, aged care, emergency responders or emergency call centre staff, self employed people. I know several extremely intelligent people with this disorder.
So, have I blown your mind wide open with new possibilities? I hope I have, because you appear to be one of only a few who have to ability to handle it all, take it in your stride, and work with it, and not be overwhelmed by it all. Most of us end up crashing with symptoms when we try to take that much in in one go.
Thank you Dan for all you are doing. I started getting very involved, but then the whole world of FND started opening up and things changed faster than I could keep up with it, and faster than my medication addled brain could remember.
Plus I've also been dealing with an 'is it cancer/no it isn't cancer/yes it is' thing for the past 2 years and the final lot of medication I was given late last year seemed to completely wipe my memory, so now I'm off it, and back onto the hormone that killed a 10 year old, inoperable metastatic endometrial tumour under my right diaphragm that was misdiagnosed 6 years ago as something completely different after it left me with a torn and paralysed diaphragm. Anyway, now I'm slowly re-learning everything that was stored away in my memory banks before going onto that horrible medication that left me a zombie for 3 months. Yuk!
Have you seen my own website somatoformaustralia.org . It's now woefully out of date, but I get a lot of enquiries that I immediately send off to fndhope.org
Enough already! Sorry about this book!
Hi Vivienne, I would say I can't believe what you have wrote and how you have been treated but unfortunately most of us can relate in most ways to this. My first year was a blur of pain, anti depressants thrown at by the bucket, paramedics accused me of trying to commit suicide in front of mt partner while I'm in a seizure hanging on to the phone emergency line as unable to move, hardly breathing, it was so hard for my partner let alone me. He used to pick me off floor with his bad back before I had the greater occipital nerve block in my brain, I just don't understand how so many diagnoses are given to people with FND symptoms, and turns out they have other problems too that are either ignored or treated when they didn't need surgery. It's frustrating to read what humans are put through because a professional says he's right, the patient is totally ignored and if you dare to disagree if your capable of talking they just get rude, sarcastic and hurtful. None of this can be called progression into an illness that is destroying so many lives all around the world. There are 2 pioneers in England and even after the long wait to see them, get diagnosed, your then left again waiting for another appointment to be asked more questions that I am unable to answer as in painful seizures as to wether they can either offer me help or not. Everyone today has heard of cancer, ms, md, Parkinson's but there is hardly anyone who has heard of FND, my friend daughter is a dr, married to a dr and they have never heard of it. It's so unacceptable to destroy people and theirs families, to be just left to suffer, to be told no one understands what we have but have never heard of it either is so soul destroying. Sorry for rant, I've lost my way. Best regards Lisa.
Hi Lisa-anne. My FND journey is possibly like many others - symptoms that have come and gone over the years. e.g. issues with walking (felt like walking through treacle) in the 1990s plus the big seizures...they all went away when we closed our computer programming business that wasn’t making any money and then moved interstate. I think also going gluten free helped a lot (did I forget to mention that gluten sensitivities are grossly over-represented in people with FND, i.e. gluten produces a very strong neurological interference/damage, both short and longer term).
Anyway, from very early 2000 onwards, my symptoms virtually stopped. I suddenly developed a major gluten sensitivity on 1st Jan, 2000 - a very nice little present for the turn of the century. So stopping the gluten stopped me from having big seizures and walking issues...and they stayed away for 6 years, until I got cancer and at least half a dozen very close family members also nearly died or had life altering or serious life threatening problems, all at the same time.
By the time I needed support post hysterectomy and during radiation, the only people left to help were two sisters-in-law that I didn't know (one had only just married my brother). Peter, my partner, was still recovering from major lung damage from BOOP and when he visited me in hospital, he would walk the very short distance from the car park, across the bridge straight into the hospital and up the lift. When he arrived at my bedside, I would immediately give him my oxygen, which he would use for the next 15 minutes until he could breathe normally again.
All that kind of stress brought my seizures back with a bang in 2006, though fortunately no walking issues this time around.
I went through the usual issues with getting a diagnosis and being treated with the greatest of disrespect etc, and my confidence in my own mind went through a tremendous battering. I had one of the strongest concepts of self and self awareness that I have ever come across. I had already had many serious illnesses over the years, and I knew what every square millimetre of my body was doing, 24/7. So being told I was making it up, that I was creating symptoms inside my head, was the greatest of insults to me. Now I can see when my head is creating symptoms, and I can watch the whole process...and reverse it sometimes.
I can also see when the symptoms are from a completely non-head source, e.g. from one of the many other sources I mentioned yesterday.
Anyway, I now have a really great doctor. He employs, supervises and teaches first year doctors, straight out of med school. His stated area of focus is musculo-skeletal issues, and he chooses to treat me medically and completely ignore all the emotional issues/garbage that I've been carrying around for decades.
His comment is that he employs enough other doctors who can look after these issues, plus he has a couple of psychologists who work out of his clinic, so we have become experts at getting to know his young students and finding their strengths and weaknesses (and using that to our advantage).
But for serious stuff, I always go to the boss, and he treats us both with equal amounts of dignity and respect, telling his young students and doctors that we are both 'interesting patients' due to the wide variety of uncommon and/or rare diseases and disorders that we have. So I can't complain about the way I've been treated in the past 7 years since finding this doctor.
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