FND is a symptom not a cause

[AjaStar]

I’m starting year two of this terrible disorder. Diagnosed with FND so the neurologists won’t order more tests. But as I read other posts and videos of people’s experience with FND, the doctors should not stop trying to find the root cause of our disorder because FND IS A SYMPTOM. Some people have finally found the real reasons they have FND. Some were caused by concussion, or after being sick with fever from a virus or a from a vascular issue, or from a systemic autoimmune disease. But most of us are still in the dark. I keep going to the doctors for help but they don’t take the time to actually think, investigate and research what is causing my FND. They just say you have FND and nothing we can really do about it. When you experience symptoms it’s your body telling you something is wrong. FND is telling me there is something wrong with my body but these docs don’t f-ing care. I am suppose to suffer this everyday. I can’t figure this out on my own. Can you good people please respond to this post if you have found the real reason for your FND. It will help the rest of us know what the possibilities could be and rule some out. Thank you and I pray we all manage well this new year.

[Hidden]

I totally sympathise with your predicament and believe you are right to say that “FND” is actually a collection of symptoms, cause not yet known.

Or else a person might be diagnosed with a disease such as MS or Parkinson’s but the neurologist decides that these aren’t demonstrating disease progression therefore the cause is assumed to be “functional” overlay (secondary FND).

Re possible biomedical causes of neuro symptoms - mine were a mixture of conditions - not yet all formally identified or diagnosed. But that’s okay although I don’t think I’ll ever get “FND” formally redacted from my notes.

My theory, for what it’s worth, is that it’s a very complex overlap that causes neuro symptoms for most people. Now that I’ve worked out so much I’m also more aware and ready to accept that there are some secondary psychomatic aspects to my own neuro symptoms. This should never be referred to as “functional” though as the truth is no doctor actually knows what’s causing what with me. I’m guessing it’s the same for many of us here. I don’t know either but my hunches have mostly been found to be good in the end.

From continuing to read and comment on posts here I have noticed that many are distressed by the idea that symptoms of “FND” may be assumed to be psychogenic. But honestly, I think the possibility that neuro symptoms can be caused by PTSD or other mental illness shouldn’t be the thing we fear most. People with mental illnesses get better treated by doctors than most people do with “FND”.

In fact I’d prefer all my doctors to a knowledge that living with my rare and common conditions is depressing. And a few symptoms like my tremor and gait changes might be due to habits forming or me subconsciously trying to demonstrate the invisible issues my various biomedical conditions. But they might equally be signs that my conditions are progressing untreated. Or else that I have undiagnosed conditions that are too rare or hard to diagnose. Same goes for most of us here.

What I will never accept is the premise of “functional”. To me every symptom we have is organic whether the underlying cause is mind or body or both.

I believe FND” is a con of a diagnosis because it neither allows for serious mental health conditions nor treatable or untreatable physical conditions, sometimes very rare.

And there is no real acknowledgment from the medical profession that it could be a complex mixture of both. Or even that medical neglect or incompetence could have caused PTSD of itself. As I read recently - the medical professional are extremely bad at admitting responsibility for causing us trauma. Instead they tend to project their failure onto us.

The potentially fatal risk is that rare diseases and as yet undiscovered diseases and also serious mental health conditions might well be overlooked. This leaves the real causes under researched and left untreated which is seriously concerning.

And, from a mental wellbeing perspective, this of itself causes what patient communities call medical PTSD or mPTSD. Which in turn results in people deciding not to visit doctors ever again. Or else finding every future consultation and investigation terribly stressful as I do. Each time I’ve left a neurologist’s office I’ve been forced to choose between my highly prized instincts and the neurologist’s knowledge. So “FND” temporarily knocked my inner radar off course and left me wondering whether I should trust myself or the physician - one of us had to be wrong. If I’d run with the neurologist’s “functional” agenda I might still be living with the misguided idea that I could improve or even be cured. Now I am trying to accept that this overlapping mix is just I’m stuck with and 3 neurologists have made this much harder.

The cause of my tremors, vibrations, falls, numbness and pins and needles with dizziness and stomach problems throughout the tract are as follows:

Family history/ genes, Hashimoto’s hypothyroidism, Sjögren’s Disease, “significant” Degenerative Disc Disease, small vessel disease (brain) Small Fibre Polyneuropathy, Hypergammaglobulemia, Raynaud’s Disease, Erythromelagia, chronic constipation, chronic gastritis, GERD, overlap Connective Tissue Disease including RA, Lupus and limited cutaneous Systemic Sclerosis, Eczema, Actinic Cheilitis (a sun damage related premalignant skin disease) Hypertension and glucose intolerance.

Still to be confirmed or excluded by tests are Pulmonary Arterial Hypertension, EDS, lymphedema and MCAS.

Now call me old fashioned but I don’t think anyone with this lot could fail to tremble and be a little anxious or even occasionally depressed?! But nor can any doctor safely rule out that one or several of these are active and causing my neuro symptoms enough to ever safely diagnose them as “functional”. Therefore diagnosing me with FND overlay was arrogant and potentially dangerous.

It’s taken me a lifetime of living with autoimmune diseases to work out which symptoms to ignore or just accept and which to go to the doctor about. “FND” has slowed the monitoring and investigations down by 18 long months. But far worse it has caused me a relapsing and remitting mPTSD and I don’t think I’ll ever be able to forgive the neurologists who have created this gaslighter’s charter.

Hope this isn’t too horribly bitter. I don’t mean to be but I’m still awaiting my ACT (CBT for people with chronic medical conditions) to start so hopefully there’s hope for me yet!!😉

[redhead63 in reply to Hidden]

I know how you feel. I was diagnosed with a Functional Disorder too. Even tho that the Mayo Clinic knew that I have Raynaud’s, Small Vessels Disease, Micro Vascular Disease, Sjogrens and a few others. I think they were to freken lazy or to stupid so they just labeled me and had the frekin nerve to tell me that I had nothing wrong with my heart even though there records indicated that I have an Dilated Right Atrium and was diagnosed with Coronary Artery Spasms which was misdiagnosed. The Cleveland Clinic diagnosis me with Small Vessels Spasms. Now my medical record is tainted for ever. They all suck. Lousy Doctors

[Yellowfinch]

I have been diagnosed with vestibular migraine. So many symptoms overlap with FND. I think FND is an umbrella term for a neurological disorder and they are unsure of the cause. Something is causing neurotransmitters to misfire but many things can cause this. In my cause it was hormone fluctuations causing vestibular migraines. I think if people can find the root cause they can get better.

I went to a GP, professor of Neurology, neuro physio, Natropath, Neuro Psych and finally a Chiropractor specialising in Neurology and vestibular dysfuntion.

The Chiropractor is the person who diagnosed me and has seen many patients with my exact symptoms.

Please keep looking and don’t give up!

[DNE92 Moderator FND Hope UK]

I feel like I'm banging my head off a brick wall when I keep getting told I am converting my trauma and I'm no doubt labelled as one of those "difficult" patients who can't accept a psychological diagnosis. Actually I can as I also have Complex-Post Traumatic Stress Disorder (childhood development). From family history and our own research (helpfully aided by a post here) I have an appointment to see if I have ion channelopathy - I'm not pinning my hopes on it but it is something that should have been ruled in or out by my Consultant Neurologist. Instead I am now nearly 7 years into having FND and deteriorated over those years and offered no treatment at all - despite repeatedly telling my Neurologist that my psychiatric input has purely been about my Complex-PTSD and that there is only 1 direction of flow i.e. FND makes my Complex-PTSD worse and not the other way round. All I can say is just keep pushing for tests - get your research together first and then get your GP to make you a referral.

Good luck.

Lou

[Jofachiz1 in reply to DNE92]

Hi Lou. I hope it was my post that pointed you in the right direction 😊. How are you faring in getting the channelopathy investigated?

[DNE92 Moderator FND Hope UK in reply to Jofachiz1]

HiI was down in London in September getting all the channelopathy tests done. At the time they were pretty certain that it's not periodic paralysis but they instructed a full gene panel scan. I'm getting a call in early March and will find out if they have found anything. It's a weird feeling because if it's something genetic perhaps there may be an effective treatment but then I worry that if it's genetic, I have children and really don't want them to have what I have. If it's FND I feel that the medical profession is still very far from a true understanding of it and, without that, effective treatments are a long way off. But very glad of the heads up on channelopathy - I would never have had all the tests carried out without being pointed in that direction. Thanks.

Lou

[Chingona]

I agree with you about it being a symptom and not the root cause. I think if they could be more open to the idea that they don’t really know that much about FND it wouldn’t feel so heartbreaking. Although I wasn’t officially diagnosed with FND that’s all my neurologist talked about from day one for two years and he seemed pretty set on diagnosing me even though my tests were abnormal they weren’t abnormal enough to be anything (@&$!?) The thing is I decided not to follow up after my last rounds of tests (neuropsychological test which showed no signs of conversion disorder but minor brain processing damage possibly from seizures & an MRI( which showed my chronic ear infection and small vessel disease)

So I think the problem was that when I first went to the neurologist I had a typed a list of my symptoms 🤦🏻‍♀️ I really thought it would help but I think it made me look crazy. Also when I was having lots of seizures I had so many more symptoms and if you’ve ever had an aura before a seizure quité frankly you feel a little crazy. Once I managed my seizures it was left side hemiparesis, chronic neck pain, chronic left ear infection, nausea, sudden scoliosis, balance issues and partial complex epilepsy.

When I first started going to doctors I kept asking them, could it be the lump I had surgecially removed from my cervical spine ( on the left side) they all assured me no and I stopped asking after awhile. After I had an EMG done on my spine it confirmed what I had been saying. My cervical spine was severely damaged, causing the fluid in my ear unable to drain hence the ear infection, balance & nausea , blocking information and oxygen from my brain and body causing damage spots on my brain/ seizures, also causing left side weakness/ numbness which over the three years has caused Scoliosis.

The lump I had removed caused symptoms right away presenting with fatigue and nausea and within a week it was full blown FND symptoms. When the doctor tested the lump after it had been removed he said it was likely that I had some sort of trauma to my neck ( I had been in a car accident with whiplash) and my body created a pocket around the nerve damage which eventually calcified into bone. I remember hearing it tear and rip as he removed it. So there you go! For me FND symptoms was basically caused by minor surgery 10 years after a car accident, because I was embarrassed of a ugly lump on my neck!!!

What I’d do for that ugly lump back!🤣😭

[Justdrea81]

My FND seems to have been triggered by a severe vitamin deficiency, which also kicked up fibro symptoms (I had chronic fatigue symptoms before this). The professionals haven't decided where FND ends and fibro starts. I have been on low dose naltrexone (LDN) since the end of last January. All of my symptoms improved dramatically. Before LDN, I was working remotely but not doing a great job at it. I couldn't drive. I was exhausted all the time and I had constant pain that no one could figure out, other than to say "fibro hurts". Now I'm back to working full time in an office and driving. I switched jobs and I'm excelling now. I had to see a naturalpath to get the LDN, and it's not covered by insurance. I don't care. I have my life back.

[Justtryingtolive]

I'm sorry you are going through this. I certainly believe this is all very misunderstood and not a thing by itself on its own so a symptom - I've honestly given up on doctors; I even tried asking they could remove it from my files to no avail as I feel mistreated and or lacked thereof when I go see them for a different issue. What I did and studying on the medical research side of things help but I just saved up money from working part time and invested on having my genome (DNA) sequenced. I found my answers I finally needed but despite this they won't help me as they are so hammered on the diagnosis they already made even if it's not correct. All I can do at the moment is learn about the true condition, save up for assistive devices and hope that one day they'll listen. I would try private but even private here I feel is a bit corrupt and not worth it with people that work from the general system doing private clinics, the only thing is shorter waiting times but the same tests are the exact same - you'll still (at least where I am) go to the general hospital and do the tests there without contrast for the MRI so it won't display active lesions if MS is a possibility for example, they tend to require a GP referral from the general system so they'll know your diagnosis already and yes I've lived through it all for so many years and working in the medical side of things, unfortunately, I've seen it happen. All I can truly from my heart suggest is invest on genome sequencing. I did it through Dante Labs (not sponsored or spam) as they were having a sale at the time with their kits, and they were on my budget (relatively) and covered a lot of diseases I wanted to exclude, and 100% I believe of the genes known to cause x,y,z condition - with state of the art equipment - at the moment of typing and they update it (if you want that is) I just got it as I wanted to know more about me and knowing FND wasn't the cause of it, which I was correct, but you can do it through any company; they took forever to get back to me so I had to push with them a couple of times but overall it was a good investment and I wouldn't ever take it back. The doctors here now....are another story. It's sad we have to reach such stage but not everything is straightforward and unfortunately, many of us (more so us diagnosed with "FND") become our own advocates. To me a lot was influenced through past files on my medical notes which shouldn't have but I'm scared each time I end up in hospital and they are not very understanding to me and think is all in my head. Even if FND is the only ultimate explanation if nothing else is to blame, genetically (as I say you cannot lie down to your nucleotides) more research is definitely needed. MS years upon years ago was said to me all up here before MRIs with contrast were available and more on the mechanisms were discovered. FND requires the same as much of the treatment is pushed as mainly "psychological". Don't get me wrong a lot of conditions have that element implemented into them but I feel that FND has that much more than it truly is needed. The explanation is never crystal clear either when the general system doctors diagnose you with it and when you finally discover what it is or described as (no matter which words you put it as) it still holds the same meaning from centuries ago. A lot of it has changed, for sure, but I feel as though as humans if something cannot be explained they put it down immediately as due to the mind converting symptoms. I was on the exact same boat and felt I couldn't trust them and helpless as the people who were supposed to figure it out weren't helping me and just shutting me down (and still do to an extent, here in the UK) even though I knew genetic tests could be the ultimate for me to hold an answer so I finally caved in saved up and did what I thought could get me 1 step closer to finding an answer for once and all, now I feel more empowered with the information I have as that will change things, things inherited that now I know could also happen in the future (so for example I discovered I have genes known to cause familial ALS as well as CMMRD and Lynch syndrome that increase my chances of certain cancers up to 90% and I know that is true as a lot of my family were affected by certain cancers and at a fairly young age) so I can take a proactive approach right now to decrease the chances of those occurring. I'm still learning and as my grandma says you don't stop learning until the day you die so yeah that's a bit about my story and what I did and what I'm still doing and fighting. I hope you are honestly doing well and don't despair there are a lot of us out there and just as you I'm still fighting and won't give up. So please don't either <3 I feel as though I rambled on forever but I hope this gives you some comfort or to anyone reading or ideas on what you could do; I'd appreciate some too back i.e. if you found any or what you did in order for the doctor to finally listen to you? etc.