hi all went for my first appointment in a long time. The neurologist was barely out of nappies. They want me off all my pain meds so my migraines will go away. But happy to put me on blood pressure meds for headaches. Told me my facial paralysis and spelling stuff incorrectly and tending to walk to the left was all part of FND as well as my restless legs. Don’t think I will bother going again waited 2 years for a face to face so disappointed 😢 I would like to thank you all on here for supporting me and saying so many nice things to me. I am sending my love to you all.X No I won’t give up on me. Even if the neurologists put FND? They used to say that about endometriosis which I also have but now that is actually believed. 20 years later 😳 I hope everyone on here starts to get treated with the respect we all deserve. Maybe in time we will all get a proper diagnosis instead of being fobbed off Xx
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My neurologist was useless too and totally dismissed my symptoms as FND related when in fact they were due to a B12 deficeincy ! Has any one bothered to checked your B12 or folate ? ? ?
As hard as it is try and stay open minded FND is just a label for we havn't got a ruddy clue what is wrong with you.
Are these tablets prescribed or do you buy yourself ? Really you could have done with blood testing before supplementing. If you do have a B12 problem oral b12 is not always absorbed. Rheumatoid arthritis can cause chronic lethargy and most certainly doesn't help. I have osteo arthitis and inflammation.
Hi im so sorry thats horrible i agree with Jill Vit B12 and folate but also add Vit D as all 3 of mine where major low all required meds.Im so sick of Doctors these days i do not wish to see them at all as i have 0 trust or faith in them
I am on my 5 th new doctor in 2 years I also get put with the trainee or latest go as I put a complaint in about my go practice. So now I get a lot of pushback from Gp X So understand what you are saying Tabe
Totally agree re B12 but also ask for thyroid test. I was found to have an underactive thyroid and now on meds as well as 3 monthly B12 injections. They haven't improved my symptoms but have helped many. I read a book last year called Could it be B12?. Worth a read.
I have hypothyroidism ( graves ) but also suffer with parathyroid issues.
Due to a low b12 result I was given the loading dose then 3 monthly injections. I can assure you this does not suit all and due to ongoing symptoms my Dr reluctantly prescribed every 2 months. The NHS seem to think one size fits all. I can assure you it doesn't. I were so poorly I had to take matters into my own hands and now self inject.
My gp refered me to a neurolgist where I waited months to be seen. Had I not have taken matters into my own hands I would have suffered further nerve damage. The swine of a neurologist totally dismissed my b12 symptoms and labeled me with FND !
Hi that's pretty annoying for you, just because there a neurologist doesn't mean there an FND specialist I had to sort my own help as I got diagnosed in 2020 by my local neurologist who gave me a website to read and left me to go home, no follow up nothing. We went to the Walton in Liverpool who have a specialist team in FND. If you suffer migraines it's a tricky one as pain killers can cause this but it's working around with you to see what causes the most pain your migraines or your body and if body wins out it pain killers if your migraines win out they should try to help you find an alternative. I'm currently on paracetamol, codeine, nerve blockers and been referred to a physio, with the intention of knocking my codeine down slowly so I'm personally controlling my decent starting with lunch I used to take 2 morning, lunch and dinner and Im down to 1 mid day. It's finding what works for you I also when able to do exercise classes through fnd hope they do seated dance, seated yoga and seated pilates hope this helps and yes definitely ask your gp to see if your b12 is low as it will not help you get iron in your body which will make you anemic and more exhausted 😊 xxx
really feel for you! I am still undiagnosed but latest doc thinks it’s FND - my own doc ( lead doc at my surgery) who I had to have a call with before being ‘ allowed’ an appointment to discuss where I go from here ( 3 years no diagnosis) shouts down the phone… ‘ it’s your posture !!!! Deserves a punch!!! Never even read my notes before calling me. Don’t give up xxxxxxxxx
wow Judiy they are getting worse FND?! Whatever what a load of crap they all need to go back and pick up a bag of understanding and empathy. And doing what a doctor should do and diagnose a person is what they are paid for X
I agree, it makes you wonder how much training some of them has had. I am sure my gp is just the surgery window cleaner he sure is wet behind the ears. 🤬 If you try and complain to the surgery manager they dont come back to you.
The differentials are Hemiplegic migraine and Neuroligucal Lyme. Please seek a 2nd or indeed 3rd opinion + Gaslighting and diagnosis momentum is a thing these days
Please don't give up. I hear and understand your frustration and disappointment. Please know, I'm here if you need. Yes, I am an internet person, but my sympathy and empathy go as far as people need it.
Take a step back and take some deep breathes. I know to a good degree what you are going through. I lost my career, my quality of life, and almost every aspect of things I used to.
But, what I gained in knowledge and life lessons out weights the struggle and hardship. Yes, I speak for myself on this. I'm not trying to put you or your experiences down. More sharing any hope i can to make sure you amd everybody else doesn't give up.
If it will help, check out my page and past posts. Look at others as well. This community is huge on sharing information on their journeys.
I have watched many people go from your shoes and mine to finding put they were misdiagnosed. This is why I say talk with and many people as you can. Things that helped others helped me ask questions to drs to help me.
This all said, stay strong. My messages are always open. I can be an ear if anybody needs or anything I can.
Weslie, I'm proud of you. Picking yourself up everyday, doing the best you can to make a life for yourself. I don't know you personality, but my friend you are loved and supported here. I promise. Don't give up, please don't give up.
Thank you for all of your kind words Mr Hatter I’m a few years in to this and no I won’t give up even if I am downhearted at the minute… I’ve got family that rely on me looking after them X But it’s nice to know I can talk to other people outside my family as not everyone understands what we are going through X take care
I would tell you all the horrid stories I have read about patients misdiagnosed or lost everything from FND. I'm a person that messages my friends with medical issues daily. Letting them know somebody is there.
All this said, truly reach out if you need. As the one song goes. "Lean on me, when you're not strong. I'll be your friend. I'll help you carry on. For, it won't be long til I need someone to lean on."
My goal in life, make sure everybody lives happy... healthy... and as pain free as possible both mentally and physically.
Thank you so much, this makes me smile so big. Truky thank you. I'm here for everybody. I told my neuro Dr today about this website and shared a few stories. She is the first Dr that told me she agreed with my stance on FND that it is used because we don't have the tech to figure our what is going on. She is even part of a team that is actively trying to figure it out.
With that said, information She gives me I will share on here. I think she mentioned she has heard of this website, so if my Dr sees me reply to this. Please share if I'm saying anything wrong, I don't want to give miss guidance to anybody.
This all said, here for everybody. As a team we worked together to advocate for one another. You all really helped push me to learn more about neuro problems. Because of this I'm so glad to see many people here are getting told of an actually issue. Yes, nobody like to hear they have neuro problems. But being told there is a reason now besides "Stress" is huge
I will say thay for us all. What we all suffer with is quality of life destroying. It brings down some of the strongest people. The more we rally together the better we will be to help us all!
In my case FND was simply a way of gaslighting a patient. As I have said many times before I no more have FND than I have a boil on my bum. FND is often used in the UK simply to get people off of consultant lists. It makes my cross.
I hear exactly what you are saying. I to this moment call it a get out of jail free card.
This said, I also believe that a person can have neuro problems and FND. This all said, our lack of knowledge to understand the brain is a lot. With neuro, there are quite literally millions of neurotransmitters and chemicals. The brain even choosing decisions for our conscious self by allowing bits of the subconscious to lean us in a direction to interfere how we speak, react, perceptions on issues, altering memories, etc etc.
Due to all of this I said in the last paragraph, we have a lot way to go in terms of understanding neuro problems. It is no excuse to how people with FND are treated. My yesterday appointment i sat down and told her stories of people on here. I told her how horrible it is people diagnosed with that are treated. After 15 minutes of this I could see the shock on her face. She lowered her head and we discussed how horrible that is and ways we could think of to improve this.
I go far enough to say, she understands to a big degree and agreed with me on my opinions. While also helping me better understand medical school and what they are taught. Even saying due to the oddities of how neuro problems happen, it is extremely hard to diagnos problems, especially those that are dystonic features not caused by anything we can see or test for. Caused by just changes within the DNA but not mutation but simply the brain growing and changing chemical amounts that the brain must automatically stabilize. Then we introduce things we deal with in life. Not just stress. Our food, the air we breathe, the water we drink, the chemicals we may interact with from past jobs. The list goes on and on of things that could cause problems.
I'm not saying this to say the Doctors that have treated us horribly should be forgiven. In fact quite the opposite. I'm saying doctors need to open their minds, swallow pride and really try to better understand patients as people just like patients should try to show to a Dr.
My neuro Dr said she understands why I studied so long and lied to a Dr about a diagnosis to even be treated. In fact, she said she was proud of me. Said how amazed she is that I've worked so hard just to be able to sit and explain this to her. Said that at many times getting a diagnosis I have takes over a decade for many people. But because I challenged doctors, lied to doctors to get treatment, it shows that how much we truly lack to help patients.
Once my Dr knows exactly what I'm going through, I will write a book or have somebody do this. Not to put doctors or people down. To help doctors think more but to also help inspire people to push hard, study hard, allow themselves to rest. To reach out for study, interview people, do as much as they can, doctors are people too. To err is human. There is no excuse for maltreatment but I do understand lack of knowledge.
This all said, I'm here to help every one I can. Help do research and help others grow and get treatment they deserve.
Well put Mr Hatter I hope you do go on to write a book. It would be amazing from an actual persons point of view instead of doctors. I believe a lot of professional people do not have the time to listen and have the attitude of that’s what youv e got here is a piece of paper go and google it. My very first neurologist Dr Boix was wonderful and told me I had small vessel ischemic disease he could clearly see it on my scans? He unfortunately left due to ill health. The rest I’ve seen like I said gave me paper told me it’s me doing it to me. That I needed to see a councillor for depression etc etc. My own dad died of a brain tumour I am not saying it is hereditary god forbid but they treated my dad for 2 years prior to his diagnosis as if he had Alzheimer’s he died age 64 X
I will start by saying, I'm so sorry to hear about your father... I cannot imagine the way you have felt or feel. What you said reminds me of the singer from the band joy division, Ian I believe it his name. He developed epilepsy and seeing as we didn't have treatment for him in the 70's he eventually had such bad depression he committed suicide. Now I say this story not saying your Dad did this, but from what you said after.. if he just had been treated 2 years before.
This is a reality for many people. I go as far as to say, for myself. I've lost so much cognitive and physical abilities that even after a Dr visit, I have to take days to recover because my body and mind are so shot to shit I can't do anything. To say, if it wasn't for alerts on this website, I was planning not discussing medical at all. To help and inspire others always takes the top priority even over my exhausting. This is just how I am as a person.
I'm sorry to hear your former dr that helped so much took a step back. I am proud of him though, being able to see how his work has destroyed his mental state that for his own sanity needs a break. I commend him for that.
What I ask, are you able to get the imaging and notes from him? Not sure where you are or what medical system your former dr was. You should at least from what I have done, be able to request all of those documents. Even if you lack the funds, they legally must give you the notes, they are your property not the clinic or hospital. Going through management will work, it will just exhaust you. Don't let rhe fatigue stop you. Take breaks as needed but the harder you push the better results you will have, I promise.
This all said, I hope I reach the point I can write the book. Never done this before but I will figure it out. I would really like if even after my time, I can still inspire people to continue their growth and strength. It isn't weak to ask for help, a person isn't less for needing disability. A younger me over a decade ago said "pppft, I can handle neuro problems." Well, life said "Alright Mr. Cocky, money where the mouth is big shot." Haha, years pass and I say. I hope I make 15 years old me proud. It isn't easy, but I do my best.
I will end by saying, somethubg has helped me. Instead of saying "Man, I want to go up to past me and knock him in the head." I started thinking "I want to go to past me, give him a hug. Tell him that everything will be okay. That future me loves me and loves younger me. No matter what happened. To stay strong, understand that people make bad decisions, but the understanding I will acquire will help teach life lessons. To understand people are people. That I am a person that has a line of people behind me, that have problems I will never understand but will empathize to the best I can." Saying things like this has brought me inner peace and love. I'm saying nobody else has done this. I will say, if anybody hasn't. Give it a shot. It won't work instantly, but it does allow you to see more balanced clear.
you are an amazing young man Matt and a wonderful inspiration I hope you are truly proud of yourself and how far you have come on your journey. Sending you a huge hug from me X
I am proud of me, very much so. For a number of reasons.
The biggest ones are being here for you all. Doing my best to learn and spend time learning more and more about neuro. Standing up to Doctors and making them use their degree that worked so hard to get.
At the ripe age of 26, I can say I do my best for everyone. In fact, in my will.. I have on there, to open me up and study my brain and use it to learn. Once that happens, turn me into ashes,put them into a tree pod, and allow my ashes to help a tree grow.
All this said, to the day I die and my last breathe. I will do my absolute best for others.
Your stamina and knowledge is an insperationto us all.
My head unfortunately is not able to withold what I read. Never the less I will not be gaslighted because the consultant cant be bothered to look into my diagnosed conditions. In my case as with many others FND wasn't explained or discussed with me during the 20 minute consultation. The first I new of it was when I were copied into his letter to my Gp. To give a patient a piece of paper and tell them to google it is simply abysmal.
These sort of consultants need to be exposed, stamped out and shamed for their action. It is rewarding to know your Gp is actually listening to you and taking notice.
Oh, I don't have a GP. No offense to GPs these neuro problems are out of their reach to know. My full time Dr is my Neuro Dr and her team. A team that's focus is only motor issues Neuro.
The reason why my Dr speaks to me the way she does, is she knew and knows I will 100% question her. Granted, she isn't one to lie. So we speak on FND more as a topic not a diagnosis. From this conversation, she admitted we do not have the technology to test for. It's extremely difficult to even figure out and she knows that the diagnosis of FND is really a.. We don't know and can't figure it out." She also says the way a person walks with FND is different, which I knew before. So it is basically an opinionated diagnosis then they ship you off to therapy because again, we have no idea what to do.
I then shared with her stories of people who are given thay diagnosis and the damage it is caused by this. At the end of my explanation of this, she looked at the ground for a minute the look of sadness behind her eyes. She personally isn't one to give that diagnosis out. But the stories I share with Dr's after speaking with people here, it is horrid and awful how the medical world treats patients. From there the conversation changed naturally do to the level of heaviness in the air.
All in all, til the day I die, I refuse to give up this fight. The amount of people who die, lose their quality of life, and are harmed by this diagnosis. It is a life goal of mine to be a spokes person for neuro disorders and diseases and push for Drs to learn and help.
I have some very serious autoimmune diseases which the neurologist I saw didn't even consider. My gait is altered by a scoliosis of my spine. I have a long list of conditions yet in 20 minutes he diagnosed FND albeit he did not discuss this with me ! The first I new of it was on a copy of the letter he wrote to my Gp.
I have a case against him because such an unfounded diagnosis could cause me serious harm or even my life if Iwere in a crisis with one of my diagnosed conditions. It was a simple case of gaslighting his patient.
I’m so sorry Jillymo but I am glad you will not be fobbed off I hope you win your case. It is awful having several conditions at once. I know only too well what you are saying. I went ballistic at one point when they would not give me my meds. And just like other past conditions when people were not believed until years later. I think the same will happen with this FND nonsense!Personally I would like this removed from my record I do not have FND ! I wish you calm in the storm and hope you take care X
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