I hate FND so much. I truly believe my Drs are incorrect with the Diagnosis. I can barely move my right hand and use it. I can barely walk and stand without being exhauted in 3 hours. I'm not even out of shape. It has made me lose my job, it has made me nearly homeless because I can't afford to pay rent and barely eat. I have very few family that can help me nor friends that can help me. It has truly ruined my life. I used to work 60 hours a week. I was getting ready to go to school Getting ready to study EHS, etc. Now I can barely do any of that due to the symptoms. The amount of pain I am in. The swelling of my hand and foot. The constant throbbing, burning, stinging, crushing pain on my joints. It is horrendous. Absolutely horrendous. It has driven me almost insane from merely attempting to figure out how to fix it or be cured so I can live a normal life. I am in my twenties and I watch as my life is shattered before my eyes. I absolutely hate it. I absolutely utterly hate FND. Even this post does not begin to state how much it is ruining my life. I wake up each day feeling more and more hopeless every single day. Absolutely ruined every single day. I work the hardest I can so I do not end up homeless. But I can't even work for 25 hours a week without collapsing on the ground from my legs giving out. It is absolutely sad, upsetting, and degrading. I truly believe that FND is another problem that we do not understand in medical science. It has caused me to not trust a single Dr that tells me I have FND and makes me feel that nobody cares. No matter what I try, what I do, no matter what treatments I attempt, the symptoms are there. They are horrible. I feel absolutely useless. Completely and utterly useless. I wish this disorder had better treatment than "Just don't stress, don't worry, go to therapy, and make sure you exercise" Because the disorder stresses me to piss out. My worry that I will be homeless because of the disorder is what kills me mentally. My therapist and multiple psychologists don't agree with the diagnosis and have handled my past perfectly fine. I genuinely absolutely hate FND and wish there were better options and help for people with it or other unexplainable neurological problems. The stress FND brings is no where near the "stress" I felt prior to my symptoms.
Vent and rant done. Thank you everybody who reads this. I hope nobody takes this personally or takes this in a way that I'm attacking them. I truly just feel absolutely useless from this and it is destroying my life. I know life is good every day. But man, this is the hardest journey I have ever been on.
How terrible, at your age, to have your life taken away from you by an unknown condition. I also think once they decide, all other options are not looked at. I can only hope that someone tries to help you. Please take care. Moni
I want to say, thank you very much for your words. It is a learning experience for me even though I get so angry about it. End of the day, I'm hoping my new Dr will listen to me and hear me out.
For such a debilitating disorder, it feels like there are 0 options for help. Therapy has done nothing for me. And I work a part time job at a hardware store, so PT will do nothing for me. It's just incredible the lack of care my former Dr's had on this.
I was told by them they don't know about it. I mentioned to them the three other people who have degrees in the field of psychology that do know about it and they say, I do not have FND. And my former Dr just told me to go to somebody else.
Must be upsetting to hear logic from a patient and have to know that you aren't doing your job.
Again, thank you for your words Moni. Very much.
Best,
Mr Hatter
in reply to
Have a look at wwe.neurosymptoms.org
in reply to
Hey Kitty,
I've been to this website and read the information. My symptoms are kind of like this but also not. They are more excruciating than this leads on. I believe I have MS or something else. I have my reasons due to research and looking at tests and scans. Based on my former Drs not doing all the scans necessary or doing the scans the proper way. I believe they dropped the ball and failed to do anything else.
I think you will find you are not alone with feeling the frustrations and limitations that FND can bring to your life. It is also extremely difficult to advocate for yourself when all your energy goes to coping with the impact of FND symptoms. All the while knowing that the stress only exacerbates the symptoms. It is a horrible hamster wheel we never chose to get on and can't get off easily.
I don't know how far you are along in your journey and how long it has been since your diagnosis. I am 5 years along in my personal journey of having FND and all through that time there have been people who have debated the diagnosis of FND. That alone is discouraging and frustrating.
I have found have a highly specialised neurological physiotherapist has been vital for me to make progress. Also having a very good GP and a rehabiliation pain specialist. I also have a compassionate and exceptional psychologist. It has taken time to find the right people to be knowledgeable enough to help me wit hthe right physio and the correct medications. Many doctors are quick to dismiss that which they know very little about. With FND we really ARE the experts on our own bodies because FND is an umbrella term and we all have different constellations of symptoms. Diarising and filming on my phone has been important to show treating practitioners. Also getting letters from doctors to see if you qualify for any welfare payments (I have no idea what is available in the US as I am in Australia),.
We do have some very knowledgeable programs, websites and in patient treatment facilities here in Australia. I really hope you are able to be hooked up with a similar program where you are.
I want to start by saying thank you for saying this on my post. I am 6 months on my Journey so far. You are 5+ years.... That is absolutely horrible.... I cannot imagine.... But I understand that it may be a reality.
How long did it take you to find all of those resources? I know you are in Australia and I'm in the USA so finding might be slightly different. But if could let me know at least what groups of people to speak to, or maybe the questions you asked, that could really be a lifetime of help.
FND DOES feel like an umbrella word for the diagnosis. It feels like they did everything for every other disorder, every problem, and got to FND and went, "well.... It doesn't make sense, eh, just slap a name on it and we are good." I looked my former Dr in the eye and told her how this is ruining my entire life. And she said, "Well, why not get a job at a gas station or something?" The level of insulting that was. How does a Dr that dictates my treatment, tell me that and also "I don't know."
I'm hoping that we as a group of people with long-term complications of FND can help pave the way for future people with this disorder. Maybe instead of saying I hate FND, I should say, I hate how little we know about it and how we are treated as people. Because we are people, we eat the same, put pants on the same, breathe air the same, want a healthy and enjoyable life all the same. It is only fair not to blame the disorder but to blame those that pass off the disorder as nothing. But I might be wrong on that too. It's not a blame game. In the end we all lose. So the energy we have we use to find the proper resources to make our symptoms permanently go away.
Totally understand your frustration , my neurologist as passed me on to another that as a bit more understanding of the FND for second opinion as my symptoms have become a lot worse , also have just had bloods taken n it appears a lot of my fatigue n muscle loss in arms could be down to having very low vitamin D , I’ve been put on very high dosage to bring it back up n then been told to take over the counter vitamin D , apparently low vitamin is quite common when u suffer with neuropathic disorders 🤞, i will see improvement as I was getting weaker by the day .
I'm here to listen to you my friend. I am for you. Hopefully this 2nd neuro will help you and help you not only be able to use your weaker limbs but also get you on the track to a life you deserve. I'm pulling for you, just like this entire community on here is for all of us.
I will keep in mind about the vitamin D. I know that came up as very low for me as well when I first was hospitalized for FND (Before I was diagnosed) I will keep that in mind. Maybe it has something to do with vitamin D and we don't fully understand or know it yet.
Thank you very much for the understanding Bulldog.
I will keep u informed of any progress I make or information I can pass on , but yes I advise anyone to get vitamin D checked , it’s made me very poorly .
My vitamin readings for D and B12 habe been super low since being diagnosed with FND despite being on supplements also. It's interesting to read of others experiences and see the commonalities.
Low B12 should be tested before giving a neurological diagnosis as it can be the cause of neurological symptoms and an easy fix. That said it's common to have low B12 and low vitamin D3 levels when you also have FND. It's frustrating but doing your own research about treatment options and if it's the correct diagnosis, the correct tests have been done to rule out other issues is often necessary.
It is curious what you are saying. If those two things are commonly found in FND, why exactly are people told this is not a medical problem. That Therapy and CBT are the two things to help a person be "cured" of this. I understand the brain monitors the balance of chemicals, but if vitamins that are not created by humans are commonly found in people with FND. Would "FND" be a neurological problem that is not properly researched, and as I said in a previous comment, a get out of jail free card for the Dr?
So sorry to hear of your plight It’s ok to have a rant
It’s wise to get a dr who listens to what the other people are saying re therapist etc because it’s supposed to be a multi approach whatever the cause , often this is a safety net too and any ? Over the diagnosis needs to be investigated .I fear many are given the FND label because drs don’t like nit being able to fully diagnose a patient or admit they just don’t know
This in the long run is detrimental to the patient , who may receive no treatment or the wrong treatment or get worse as a result .
I also feel drs dear litigation so much these days ..
A logical proactive approach is needed from all drs and those invoked in their carer, not a fragmented one
I hope you get a better dr
One who can distinguish between FND , is it an overlay or secondary to an organic process ..is it FND at all
You deserve much better in my view , as we all do
Let us know how you get on ..you are doing all you can ..with little support
What you just said, all of that. Is 100% what I believe and stand by. That's why I question, message, push, and prod. To make sure that Dr's are doing their jobs correctly.
What you said about FND diagnosis, I 100% agree with. I actually said that to a friend a few months ago. That exact sentence. The diagnosis is only given because Drs don't know what is going on and refuse to look into it anymore. FND is a get out of jail free card. But that card, absolutely damages the patient if you are wrong. And I truly feel that people who suffer with the symptoms for over a month, and they have remission periods, and last again for months. I 100% believe they have a degenerative neuro disorder, that was just tested too early to show any damage signs but symptoms are all there. I have no solid evidence to back this up, it is just a gut feeling. It is mainly backed by my MS research I have done extensively over the past week.
I could go all day discussing the ins and outs of why FND symptoms are real, but they aren't caused by FND they are caused by something greater. I will spare that on a post comment haha.
Thank you very much. I wish you the best on your journey through this disorder. We all deserve the help for a better future.
Any misdiagnosis is a disaster for any patients whatever the condition
It’s looking more and more likely that I have been misdiagnosed for 9 years or more
Q how can you be labelled with abnormal gait / hysterical at a gait clinic , when at the time you were struggling to walk normally .with a walking stick , .it transpired 2 years later I had been given the wrong height walking stick by a physio ..it was too short ..so that would produce an abnormal gait .. infact in messed my upper spine up and caused twisting and rotation which the rehab staff said was irriversable ..as seen on X-rays ..this has caused facet joint problems and shoulder issues ..even though I ended up in a wheelchair after rehab ..came out worse than I went in
Always truth our gut ,,it’s your body ..
Yes you can have A typical MS , not easy to diagnose
Many known neuro conditions are not e asy to diagnose even if drs highly suspect ..and those patients are left in limbo as they may not meet the criteria for treatment or support
Those drs are not living in your body
The other thing that really gets me ..there are 100s of neurological conditions that don’t have a name that are real , not under the FND ....because no funding is going to them. It all goes to the known conditions the ones that the drs screen for ..and if you don’t fit into one of those your lost
That has been the case since at least 1997 and nothing has changed
And even FND doesn’t receive investment or proper attention despite the supposed 30% of neuro patients that end up supposedly with it
You’re right it’s a fob off for the patient , a get out of jail card ..
I hope one day things will change but when I don’t know
I got refered by the neuro in 1995 for CBT
Went to see the dr who had reviewed my notes
He was angry that I had been sent to him
He said there is something organic wrong you just need to find the right dr
He said I didn’t need CBT and he wrote to tge referring dr a very stern letter ..it made no difference
After the neuro dr discharged me ..over the next 3 years he sent requests for reseat brain scans
They were all ok. He never said he was going to do this or why ..it’s a mystery ..to this day
It’s all odd but in the past ..
Never give up
There’s a difference between accepting the FND diagnosis and knowing they are wrong ..in your gut ..
We could honestly have a full blown conversation over this. Like a cup of coffee each person going down talking about this. (Not saying we will just more pointing it out)
This goes back to what I told my former Dr. "You do know, you can look up from your computer or textbook at anytime and understand life isn't black and white and for a matter of fact it has multiple edges, sizes, and more symptoms can fit under 1 umbrella. It isn't as perfect as you believe." The dr couldn't even respond. I'm sorry, but if you are going to take a part in ruining my life, I'm going to make sure I check you every, single, time, and, every, single, place. (commas were added for emphasis on that.)
I have no evidence of MS. Besides reading my symptoms, talking with people that have MS, reading studies in the UK, AUS, and the USA and really seeing that some Drs will say, don't refuse an MS diagnosis because nothing appears on the imaging. You must BREAK DOWN the patients symptoms and do what's best for the patient's life and livelihood." This is not stating give us all pain meds and just say goodluck. But if patients are having spasticity, numbness, joint pain, burning, tingling, gait, depression, anxiety, loss of vision, etc. You may want to even attempt MS medication of somebody who was not labeled with MS. What's the worst that could happen? You make their life better? I mean, my life is already going downhill, the implications of what a MS medication could do to me would not make it any worse, I can promise that.
You said it right there, 30% of people that go into a neurological office come out with FND but nobody seems to know anything about it. So I question, why is it, that a neurologist can give a Dx to a patient when they themselves are not trained, do not know a thing about it, and won't even begin to try? That is odd we live in a time where people who have no idea about anything can say something is that and it not be argued. I would rather a Dr state "I don't know exactly what this is but we are going to try a NUMBER of resources to get you back to a normal life." I can assume ALL of us that have FND would love to hear that. But no, money is not put into research, money is not funneled to those that need it, etc. Exactly like you said. It's insanity. Absolute insanity.
It will be interesting how things go in the future. I know for a fact, as long as FND is a problem, I will be swinging a heavy bat until I die to make sure it gets proper treatment and resources. Now matter what I have to do, I will do it. I'm in my twenties and I refuse to watch my life go down the tube. Absolutely refuse.
Had you ever heard of FND before you were diagnosed? I hadn't, even though it's supposed to be more common than MS and Parkinson's. That's the real problem - hardly anyone has heard of it, even most doctors, so no one cares. They think if it were that serious, they would have heard of it, so we must be faking/exaggerating. I have been literally tortured by nurses/paramedics who believe this. Dr Jon Stone recently said that there's a medical apartheid, with us on one side and all other neurological patients on the other. It's appalling.
I have never heard of FND till my diagnosis. And trust me, I'm still in constant battle with my former drs. Their words pierce my thoughts daily. They no longer infuriate me, but I know for a fact they did not care. The level of pain I'm in physically and the lack of growth I can make is beyond damaging to my mental state. Drs told me I was stressed before and it caused this. They have no idea what the true definition of stress is. Potential homelessness because of a neurological disorder that has next to no help to fix it. Being on such a budget that Ramen is truly an everyday meal. Watching yourself slow cripple more and more, losing the ability to walk almost completely in a matter of months. That is stress. Going to a job I loved, helping my girlfriend's son grow to be a good man, and helping my girlfriend through her day, that isn't stress. That's everyday life.
I am so sorry for what you are going through so young it is not right. It doesn't help when you are told one thing & someone else advises differently. I am here due to my walking gait that shows could potentially be FND however, a recent neuro visit I was advised she doesn't think I had parkinsons or ms (didn't even mention FND) which was my main concern due to internal tremors, memory loss amongst many other symptoms. I did tell her I walk at times like a T-Rex with arms stuck to my sides & the legs sticking in...this is a mild symptom...others my arms are flailing all over the place & legs to match but she wasn't concerned & thinks mine is down to trapped/damaged nerves & very bad arthritis. Now waiting on mri results to hopefully get an answer but in the meantime like you in so much pain & as for getting around it is totally pointless due to lack of strength & pain in return for even trying. Unlike you I am 58 so I can accept it a bit more even though the last few weeks have got so bad I am thinking of getting a live in carer as I cannot cope & had so many falls. I so hope you get an answer soon so that you can treat what is crippling you asap. In the meantime sending you big big hugs.X
First off, I want to thank you and wish you the best on your MRI and diagnosis. From my stand point, I hope it isn't FND. But from your standpoint, since FND can technically be "cured" and doesn't cause any permanent nerve damage (As far as we know now). It may be the best option? Don't let my comment there skew or push what you hope or want, I speak from my shoes. And I feel a type of medication that could help me regain motor function so I can live a normal life, that would be 100% better. Sadly, FND doesn't have that. At least not in the USA. Our "great" FDA doesn't have a single drug that is okay for FND people to take for it.
Our symptoms are A LOT alike. All the neurological ones you just stated in terms of memory are spot on. I used to have a SHARP memory. Borderline hyperthemisa memory. It is now all fading away slowly. That upsets me 10-fold. I can barely remember when I met my girlfriend. That was a year ago nearly. The physical symptoms are spot on as well... I do not drag my foot like some do. I have a little feeling in the top of my thigh, so I can still swing my leg, thankfully. But that alone wears me out... Being traditionally blue collar work, it prevents me from doing the jobs I was trained and licensed in. I can barely feel my right leg below the knee and my foot. I can't even bend my toes. My right arm and hand are the same thing. I can barely move my right hand and arm. The stinging, burning, and crushing pain is just enough to wear you out. I say it's on average 4/10 all day and every day.
With that, I hope your diagnosis is one that can be helped or help you feel helped. If you need the help, get the help. You don't need to be falling or getting hurt and causing more problems. You deserve a proper life as best as you can. If an inperson carer is one that will help you benefit life the most, then I suggest that.
Thank you very much for everything. I wish you the best along with everybody else who suffers with FND or symptoms like this.
Thank you for the lovely reply...we can only keep fighting & hope that we know sooner rather than later what is going on with us. I have been contemplating the carer & if necessary will definitely take that route as you say we all deserve a decent life no matter what. I wish you well too & take care.X
It is easy for them to diagnose FND but has anyone bothered to thoroughly check you out ? ? ?
Has anybody bothered to check your B12 levels - if not insist they do it together with iron, folate , magnesium. ( Dont be fobbed off ) and get copies of blood test results. Just like you I wondered if I had MS.
I was labelled with FND to later find my symptoms were due to B12 deficiency ! I suffered the pins and needles, numbness, burning stinging in my legs together with chronic weakness that I could hardly crawl out of my bed.
The stress you are going through is making things much worse with the constant thought of ending up homeless which must weigh heavy on your mind.
I went to see a neurologist for a stroke - after a few minutes he put a piece of paper in my hand and told me to look it up on the net ! He had scribbled a web address on a scrape of paper - when I looked it up I was shocked plus I couldn't make head or tail of it. Hey ho when my consultation letter turned up amongst my other illnesses was listed FND, I nearly blew a fuse I were so angry.
Are these people really Drs ? If I had wanted a label stuck on me I would have gone to Tesco. I wiped the floor with that consultant and insisted functional overlay was removed from my consultation letter's.
Please look up B12 deficiency or perncious anemia - what you describe is classic of the symptoms ie : gait, vision, burning, stinging, balance ect.
There is a site on here for B12 which I am on and talking to others has taught me a lot about the condition. If it is B12 deficiency you need to get it treated as soon as pos.
Look how many others that have replied to you have mentioned - low vit D and B12 ? I now have to inject B12 to get some relief but I still have a long way to go.
My b-12 is completely fine. They did test for that. My Vitamin D is the insufficient one and very low. That vitamin being low is a pretty high sign of brain lesions.
See, if a Dr ever did that to me, and I have had some TERRIBLE Drs say things to me. I would be SCREAMING. I'm not even an overly aggressive person. But holy, somebody would have ruptured an ear drum when I was done. Tell me to look it up because you can't? That is disgusting. Why not do your job and research it yourself and so will I? This is what I was saying to my brother. Why is it, that a Dr is the one that has to diagnose FND but they cannot begin to say what it actually is and will admit they don't know anything about it. But trained professionals that studied Psychology for years will state you don't have this disorder. And a Dr that says "Nope they have it" is the correct one? Doesn't make sense to me. I could go all day on that. Why on Earth do we live in a world that allows that type of behavior or allows clueless people that don't know anything about something be the ones to judge what a person has? I mean, call me too logical but that doesn't make sense to me.
The issues that I have with my "diagnosis." I was rerunning through all my tests they did. They did only a quarter of the job correctly. They gave me an MRI on my brain without contrast and that's it. They didn't scan my spine. They didn't do anything properly. Along with the low vitamin D and the fact that I would tell the Drs 20 people that have seen these long list of symptoms all related to MS. And a Dr would say "Well, I don't see it. So they're all wrong." Wait, so 20 people that see me 90% of my life are ALL wrong. But you a Dr who sees me less than .00000000000001% of my life is correct? No, you are dead set wrong. But because they clearly studied everything BUT FND. Clearly I have FND. It is complete hypocrisy! If I handled my job like that (The one I was let go from) I would have been FIRED and reported to the State. You can't do that at all.
That is what I'm fighting currently and yes, with homelessness on the horizon if things don't turn around. My "gloves" are on and I refuse to go down without make sure somebody who goes home to their fantastic life does their job correctly. As I said to my last Dr after I explained to her all of this information that they didn't do. "Must be nice to go home to an incredible house and have your life paved while I sit here and suffer because nobody here could do their job properly. Enjoy your lobster and calamari while I enjoy my ramen noodles every other night."
I was FUMING for days. Like you said, if I wanted a crackpot job, I would have gone to a grocery store here as well.
I hope YOU are doing okay. I wish you the best Jill!
You made me laugh albeit not a laughing matter but these consultants and Drs dont like the truth. I got kicked out of my last surgery for calling a spade a spade. The new surgery isn't any better.
My Gp works two days a week ! Lucky her. When she said to me 'have a nice weekend ' like you I blew my top, she hung up on me. I was furious after explaining to her how I were struggling.
Vit D is one of my illnesses ( hypoparathyroidism ) that's a good one to remember when playing scrabble. It means I cant store vit D so there for cant retain calcium. I am prescribed vit D and yes I have lesions on the brain which I have had for many years plus I have had strokes and TIAs due to a sticky blood condition but can anybody get their stupid heads around it at my surgery - you got it NO. It's not rocket science if only they put two and two together !
Dr's are now just the messengers, in my day Drs actualy doctored ! As you rightly say how the hell can a consultant diagnose without doing the correct tests ? ? ? You dont get anywhere if you complain Pals are useless and just push your case around in the hope of loosing it.
This was a good one - I went to A&E with heart failure. Whilst there I mentioned I had a gastric scan pending for that week and didn't want to miss it. They kept me in and after 8 long hours on a trolly stuck in a corridor I was admitted and put on a ward. I thought it odd when a couple of drs came and started feeling my belly. Insead of a cardiac ward I had been put in a gastric one ! ! !
Once discharged I called my notes and there it was confirmation of a confirmed diagnosis of cardiac failure. As I looked through the notes at the top of one of the pages somebody had written I had a gastric scan pending - can you see how the error took place ? I can, what a load of plonkers we are dealing with today. 😱 🤪
Are you aware B12 levels can be normal yet you can still have an issue ? Google it, if your diet isn't good maybe a few vits are needed.
I hope your getting some sort of benifit to assist you, if not get advice. If you are then go all out with guns blazing and go the hole hog and claim pip. It's not easy and I had one hell of a fight on my hands but I came up trumps.
You must be under so much stress with all that is going on. If honest I am struggling but i'm a determined old 🦇 and not giving up. 🤠🪓
I wholeheartedly agree w u I hate FND too, I hate that is so rare however I read otherwise, I hate that no medical professionals know a darn thing about it. I’ve become an expert. I hate all the crazy symptoms. I hate the gaslighting you get with it from others & ourselves, I hate that our bodies once ours has now completely betrayed us, I hate how long it takes to get help, i hate having my speech taken away, I hate the uncertainty that’s probably the biggest other than the pain & hindrance. No worries that’s what we are all here for. I definitely for sure know this my FND came about from a combo of prior neurological disorder Guillan Barre twice then a lot of Trauma early childhood trauma & until 6, 19,2019 in a 22 year psychologically abusive marriage. 10/11/20
Somebody on this website said once FND is mentioned, the docs stop looking. I totally believe this to be true. I had a new doctor tell me he thought I had FND, then a very respected neurologist who has many years of practice tell me he scoffs at that diagnosis. Since then anyone looking at the medical records sees the FND diagnosis, and they do not want to look at any other possibilities. I had a Dr. tell me maybe I just need Xanax, another so called specialist stood in front of me and said repeatedly that my peripheral nervous system was normal “Do you understand me? I just checked your peripheral nervous system and it is normal, I don’t even know what you want me to do for you, everything is normal.” The neurologist that said he scoffs at FND diagnosis said I should be checked for CSF leak or Ehler Danlos syndrome. Ehler Danlos is rare also and last doc said she doesn’t know enough about it and my thought was -exactly, what else don’t you know about or care to look into.
This is EXACTLY what happened to me. Granted we are getting ready to check my peripheral nervous system.
My last Dr openly admitted not knowing ANYTHING about it. And I said, "So how is it you can diagnose me with this and not know about it, but 2 psychiatrist and a therapist, who are trained in understand FND and know what it is, don't believe I have it. Why does what you know say stand above their opinions?" And I was told to get out of her office. If a Dr can't face the facts that they aren't God's. That they don't know everything and maybe before handing out diagnoses that will 10000000% ruin a person's life, why not actually try and listen and help?
This same Dr, as I was limping out of her office told me "Why don't you go get a job at a gas station or something?" I turned around, looked her in the eyes and said. "Because I can barely stand. And if anybody decided to rob the store, I wouldn't even have a chance. I could get shot and killed." That Dr went pale, and just turned around. Don't tell me to do things you yourself wouldn't do in my shoes. A few comments she made show how out of touch that Dr is with reality. Shows how absurd her beliefs are.
Hi, I am so sorry to hear what you have been through... It is horrendous. I think you are brave to say it all out straight. It helped me reading it even though my heart broke for you. I took ill at 19 and am in pain for so many years ,(not FND) but in the last few months they told me I had FND, but when I didn't fit a profile, they literally signed me out of any possibility of care. So the hope of care, for me is gone. I was hurt & angry and now I am just sad at the total waste of my time and the way I was pushed & pulled...but once I thought about it I realised while I literally don't know what my neurological condition is now, after 3 years, I live with it daily and I am still here. Without medical help. So I got me here & I will keep fighting for normality, or at least my version of it. I guess I wanted you to know that being Ill at such a young age seems especially hard & unfair and I know I became a total adult in every way at 19. The financial is dreadful but I am still here. You will get through, I just want you to knew you are not alone and I hope that helps a little. Try to be proud of yourself for handling what people double your age might not be able to do with such maturity and grace. Hold your head up....I will be thinking of you & sending you good wishes...
I'm sorry for my late response, my symptoms are getting drastically worse. To the point I've basically lost the ability to walk. It had me in literal tears earlier, watching my life fade away.
Difficult is such an understatement of this disorder we are plagued with. I cannot even think of the word. Having FND is teaching me lots of lessons, but finding a new path for myself, it's hard. I did blue collar work for the longest time and starring at the loss of what I truly loved doing and questioning what my next step can even be, it's difficult. I don't want to be on disability. I want to work. I want to benefit society. I want to help people. And I know a person can help people from a chair. But even though I can't walk, I still feel guilty even considering a wheel chair. Why? Because I still have legs that are getting signals to move. That a person without the signals, they deserve it more. Not me. I know that sounds ridiculous, but I just feel guilty about it.
You being 19 and having it.. My God, I'm so sorry... I cannot imagine... Being that age and having it. I tried to imagine myself at that age... I would not have endured it well. I remember times in my life where I starred at the floor and cried for 3 hours straight, over things not even to this level. Having had such rage, frustration... The level of patience you must have, that is truly incredible. You should be proud of yourself. You should commend your strength. In fact, know I'm proud of you.
You keep strong, know that I am here and everybody here is here for each other. I have spoken with good people on this website. Such a good group.
Again, thank youbfor the words. It means a lot. Genuinely and honestly.
Thank you so much Matt, you have made me feel better with such support..I too struggle with who I am & what my body can do. I too feel guilty, I worked for 33 years & studied through all of this but none of that is now even possible. Taking care of myself is becoming more problematic & I get so frustrated with sumple tasks; but like you I always think you have hands & legs(pained & numb) some people don't even have that. I had to ring an ambulance for a bad Fall/concussion a while back & was feeling guilty for needing it... Silly but if you are independent (& trying to stay that way) it is hard to accept that kind of asdistance. I totally get where you are coming from. Lately I have found alternatives to helping people & causes & although smaller than I would like to be able to do, it made me feel better. (I was in a book store & one of the girls I know told me she loved to see me come in because of my cheerful smile & chat, it made her feel better {she was having a bad day}so I guess that day maybe I did something good even in a small way). I understand where you are coming from & all the pressures you have on you...I know the feeling where one tiny break in your favour would change everything.. I will be hoping that happens for you.. You sound like you really need it & deserve it so much... Thinking of you....Carol
You said it all right there. To be independent and try to be for so long... And to have to slowly allow more and more help to come in, that is the most difficult part. To need help to get a glass of water or anything, when you would naturally stand up and get a glass and walk back.
See, that right there is exactly how it feels. To feel guilty for needing an ambulance when you fell and had a concussion. Should you feel guilty? Not at all! But do you think you should be able to take care of this and allow the ambulance to help others? Yes. That's how I would feel too.
See, that is a wonderful moment. The bookstore thing. I have heard a few stories like that recently. That is wonderful. My Dad told me the same thing... He said, "You help loads of people just by being there. You don't always have to do something physical to make people happier." That's honestly true. I've always just been a "Let me show you I care. Let me fix something for you, oh let me get that for you, Oh I will come right over and get you, no worries at all!" Things like that, and now I can't quiet do that.
Thank you, I feel something coming too. I said to my girlfriend, around May it will come. Not sure where that comes from or what it means. Just a random thought that passed my mind the other day.
Thank you Carol, thank you very much. You keep trucking through and making good things happen. Bringing smiles to everybody. The world needs people that can do that.
Thanks so much Matt... I am just on site today so only reading your message now... Sorry for being so slow to reply! (I got covid in between so am still struggling). I loved what your dad said to you & I do believe that small things make a difference, I guess I have to because my world has shrunk so far down... But trying to be a little hopeful helps... I hope your break comes soon, I know I am ready for one too!! Thanks so much for your wise & kind words, it is good for me to talk to someone who understands... Hope today is a good day for you... Take care, Carol
I hope you are starting to feel better and the life struggles are working through. I'm praying for you Carol. Also know, I never have the expectation for somebody to respond or at a given time. We are all humans that have our own lives, not living in the best circumstances, etc. For me to have the expectation you would be here to respond to my comments or anybody's in a limited amount of time, would be very off character for myself and rude in itself.
Everybody struggling deserves a break and we will get it. My new Neurologist is running me through all the tests we need. My last appointment I thanked him for not giving up on me and he said, "I will never give up on you. You are young, trying, and I want to see you on your feet again and living a healthy life." After the appointment I cried. That is a Dr. That is a person who I know for a fact went into the medical industry to do good. He has been practicing since the 1970's or 80's I believe. (Based on my math) and it shows.
Today has gone well so far. Making breakfast, some nice tacos. And spending time with my girlfriend and her son. A great and simple day. I hope you have just as much of a wonderful day and take care, Carol.
Hi Matt, I am so happy you met such a good Doctor, it will change everything for you.....over my 40 years I had 3/4 really good ones - one for 20 & another for 15 years)& the relief of being heard, not dismissed & helped was amazing(they are long retired now).. That in itself, I have found, to be as healing as meds or surgeries... I am being overwhelmed with Cardiac, digestive, respiratory appointments/tests at the moment, so I literally have been trying to ignore all the neurological problemd... No one is dealing with it for me & once I get my heart etc safe I will have to restart whole neurological process again (after 3 years) so it is heart breaking & tough, but I am tackling each thing as it arises....(& people always ask me what do I do all day??!! I spent hours on the phone sorting appointments, doing paperwork & budgets to find a way to pay for my next set of tests (€700 for 1), so life is busy, just not the way I would like!!)... But at least I don't feel quite as alone... so thanks to you & all here for that!!! ... Wishing you many more good days! Carol
You can’t make this stuff up. Movement disorder specialist (no.9). Saw something on my MRI ( from 2 1/2 years ago, shouldn’t that be repeated?) , and said I should have a lumbar puncture to rule out CFS leak, and I should have my current general neurologist order it. It was ordered, and of course you have to wait weeks. Finally was supposed to have it this week. Sitting there in hosp. gown , blood drawn, the nurse then comes in and tells me the Dr. Ordered the lumbar puncture test, but did not order tests for the fluid, so procedure cancelled. The hospital contacted the Dr and she said she wasn’t comfortable ordering it. What??? I called the specialist who said I should have it done thinking she would step up and fax appropriate orders, her reply was that she’s just movement disorder, but aren’t you also a neurologist?. My husband and I wasted our day, so did the hospital staff, who should have also caught this before I arrived. So, I cancelled future appts with both neurologists. And I’m asked why so many Doctors? I am a nurse, fortunate to still be working, but very close to losing my job r/t call offs. The medical system I work for has so let me down. Sorry for the rant. I know you all get it. You try and keep going and keep a positive attitude, then just feel beat down again.
Don't be sorry for ranting. Trust me, I think all of us on this page can have a good solid rant.
That situation is bogus. How does one order a spinal tap, but not a fluid removal? So what, you want me to have a needle stuck into my spine for absolutely no reason? Then why did you order this at all? Whole situation absolutely ridiculous. I agree, I would have dropped them too. Not going to work with people who can't see to figure out front from back.
As I said to one person a few weeks ago, if you have an atypical neurological disorder, good luck.
I was also reading and it was confirmed by my new Dr and a nurse, that neurological disorders affect everybody differently. The worst part about that, some of us get thr absolute worst symptoms right smack at the beginning, so early on when there is no evidence of a problem. Some people can't even get diagnosed for years because the evidence of a problem isn't there. In that time though, you could have symptoms like yours, mine, and plenty of others in the first few months and it could cause complete life stunting. Truly hindering life problems. Definition of how "Hard" it is, most difficult thing I have personally ever endured.
I hope you are able to find some answers soon. Again, rant away. That's what most post and this website is for. Sharing information and getting stuff off your chest.
I really feel for you, and I hope you are able to get some help soon as well. I wonder if there any docs out there that are reading any of these posts, hearing people's daily struggles , really hearing, and are trying to help in any way with more research. Or just show more compassion towards their patients.
Thank you. I have faith things will get figured out. I've also very recently been looking at foundations and things that can help for people in shoes. To help with housing, medical bills, etc. I have found a few and applied.
It's a brutal reality, going from work 60 hours a week and helping others to needing help from others and applying for disability, medical bills help, etc.
I took me 6 months to find this website, and nobody directed me to it, I just found it and needed a vent. From that vent I was able to speak to all of you, and it has helped me a lot. Do I think Drs read posts like mine or others? If they have time and know about this website, I would hope they do. See how this disease ruins lives for people of any age. See how people try to cope or find help and are met with disrespect, no care, and a door in their faces. You being a nurse, you might have a better idea than me if they do or not. I cannot find many associations that are researching FND since it is not a medical issue. At least that's what I was told. Which don't get me started on how that doesn't make sense. But, I guess I don't get paid the big dollars and go to a big fancy medical school to start naming what is a problem and what is something to just "get over."
FND is definitely not something you just get over. I believe there are not enough studies out there. I think they just don’t know all about nervous system yet, one day they will maybe find a faulty gene. In my searches on the internet, I did find one doctor who said he believes there is a physical change in the body, they just haven’t found the right test yet, and I wish I had saved the article. On the other hand I came across a you tube video of a young Doctor addressing a group of doctors on the topic of treating patients with FND, and as soon as he brought up his subject there were groans and laughter from the group- very disappointing. They obviously didn’t realize somebody with FND may view it. I really, really hope there is somebody to listen to you Mr. Hatter and you are able to get assistance.
I have said that exact same thing. In fact, throughout multiple areas of the body, we do not know everything about. Furthermore, I said this to a nurse a few days ago. Drs and the way we treat medical conditions is a very black and white. If it's not this, then it's that. And in reality of life, the human body, existence, it is not as simple. Life is very fluid, grey scale. And the human body, is one of the most grey scale things I have studied and looked and read on. None of it is official knowledge by any means. But I can agree with the two Drs you mentioned and your belief as well. Something with a gene potentially having mutated or it being like a trigger situation kind of like certain schizophrenic genes. If the body goes through xy and z triggers, it can trigger Schizophrenia. Not saying that this is comparable to Schizo, but more taking the situation.
The thing I always questioned is... They say it happens to those that endured severe abuse as a child, pushed the thoughts into the deep subconscious and when so stressed later in life it comes out. From my understanding that is FND. Where I question this is... And maybe this is again, me not accepting certain things. I don't believe I was that stressed when my symptoms first began. I was just doing what most people do in life. Working, helping take care of my girlfriend's son, traveling for work, getting ready to move in together soon. Etc etc. Yes this can be stressful. But I was smiling everyday, genuinely happy not matter the situation. And that's where I sit back and hear "Well, your mind is stressed. Not your conscious self" And that baffles me. Maybe again I'm not hearing this correctly or have the mental capacity to understand it right now. But I know myself insanely well and there is not reason why my subconscious that was not having any problems prior is now having problems. That is just not something I can get behind.
I can though, understand a gene mutation, a potential trigger that is causing this, which if it is, how do we fix that chemical imbalance, or at least treat it with something that isn't "CBT and therapy." Because at least for me, that didn't work haha. And still isn't working. Like you also said a physical growth that causes certain parts of the body that are not seen by the human eye. The correct test will be made one day. It would be nice if it was made in our lifetimes. But in reality, I don't quiet see that happening with Drs that literally sit back, laugh, and don't care. That actually kind of upsets me and reminds me of my former Dr. I still imagine the smirk on her face.
We can only hope. I also had no stress whatsoever, car accident 4 years earlier, was something damaged in accident? We may never know why we were dealt this hand. I agree,my only stress has been this disorder.
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