Disbelief

[Gaslitbymedicine]

Anyone else feel this diagnosis is just a failure of medical professionals to investigate? A way to write of patients and gaslight them into believing it’s psychosomatic. I don’t understand the way neurology can pretend it has the complex brain figured out and therefore can definitely say that there is no underlying disease process. Once they’ve shoved you into this box due to faulty logic then you are stuck without any help in the world because even psychiatry could find no mystery “trauma” to attribute to your problems. I’m suspect that the reason the diagnosis never gets overturned is patients stop looking and just accept that there is never going to be any help.

[MONIREN]

There are a couple of ways to look at it. I spent years with chronic back pain. Last pain management clinic talked about the complex brain. You think how they retrain the brain with mirrors to stop pain in a missing limb. This is just another complex part of the brain, but that is just my way of coping. I just don't want to waste my energy chasing butterflies. But then my symptoms are not as bad as most. Speech problems, can't walk straight, losing my fine motor skills and jerking at the worst times. Hope you are able to find answers that help you cope with life, which isn't always fair! Take care.

[SNOW10]

I agree in a sense. I believe their is nothing they can do as far as a cure. As far what they can do to help me prescribe meds I need for pain and nausea the rest I'm on my own with God. So honestly the fact they arent God and the fact most doctors and nurses are uncertain about the diagnosis help me understand they cant help with everything just a few things I'm dealing with. I get my counseling from fellow FNDers on here it by far better than seeing neuropsychastrist or other counselors. Venting to people who get it verses professionals.

[Greyrainbow]

Hi, I've been in that place and thought just that. It took 5 years of hassling everyone I could to get to Prof Edwards clinic at St. Georges in London. Different world there. You are treated with dignity and respect and listened too. I still have odd day when think they might be wrong but explained well and diagnosed on what found not what did'nt find. If you within reach their def worth try. Remember to let some out, I still have times when I have a good cry with anger and frustration as to why me but they are less frequent now. Stay strong it is a journey that we don't know when will end. P.S. my walking improved in a week there.

[terry9griffins]

I think your probably right I've been diagnosed now for 7 years doctor's have literally signed me off it took me months of nagging and the offering my GP a way out by asking them to send me back to neurology. There excuse for no more tests is that there not going to change H ow they treat me but surely if there are new symptoms showing up shouldn't it be investigated. Once I've seen my neurologist in September I'll let you all know how it goes.

I was one of them people I did give up looking because it feels no one wants to listen there happy to throw tablets at you and let you go. But on days when I get frustrated because I can't even stand at the sink and do the washing up there the days I feel like something more had to be done but generally like most people I guess I just let every day go by not knowing where to turn next.

[orfcbeas]

As one of the ones who quit looking, I completely agree!

[Pidge1997]

I agree with you. I have been fighting a losing battle for several years and finally was diagnosed with fnd this past year. The way my medical treatment was administered was horrible. This diagnosis was nothing more than we don’t want to look to hard. My medical records have been altered by clinics omitted, tests that have been done were done incorrectly so they were negated and refused to be redone. Chiari in my head, migraines, pulmonary anamolous venous return in my heart, spurring on my vertebrae, bulging disc’s in my back, but they say none of those things cause problems and the fact I have trauma I addressed and a body that has never handled medications means this must be fnd. Diagnosis made within 3 minutes of a neurologist appointment in a tertiary clinic and a zoom appointment with a motion specialist who said my symptoms stopped while he was talking to me but it was a result of setting my phone on a hard surface. I know some people have accepted it as a diagnosis and if it brings them peace I’m happy for them but as for me I can’t accept t

[MONIREN in reply to Pidge1997]

That must be so frustrating, I do think specialists sometimes leave their manners home, if they have any. Everyone is so different, but we are expected to fit in their preconceived notions of normal. In my case all avenues dead ends. It is important that you continue fighting, my personal fight is over, but that doesn't mean yours is! Take care.

[Pidge1997 in reply to MONIREN]

Thank you. I’m sorry if I come off negative I really try not to be. I feel for everyone on this forum, everyone on here has their own hardships to overcome and I pray for all of y’all.

[MONIREN]

It's not negative, it's real. It must be extremely difficult when you know something is wrong and it seems that nobody cares. I have that problem with my heart problems. I think you will find rarely do we ever get just one problem. That's where specialists get unstuck, they only see the one they specialize in. Try getting two big egos in the same room! That's what you are trying to do, get 2 to cooperate and help you. We all feel for you and wish we could do more than wish you the best. Take care.

[Daesin]

One of the symptoms they say of this FND is not agreeing with the doctors and not believing that you have this disorder. Isn’t that handy?Docs can slide another difficult case over to psychiatry and the don’t have to actually admit that they don’t know something. If it doesn’t feel right to you fight it.

[Gaslitbymedicine in reply to Daesin]

This is literally the most asinine part of this whole thing. There is literally no way you can get help if you disagree.

I intend to fight this but I’m frustrated by the lack of options and failures of medicine. I am appalled at the nerve of neurologist to dismiss patients in this manner. It appears they are more interested in protecting their egos then admitting they don’t know all the ways the brain operates and attempt to learn more.

[Shelford24 in reply to Gaslitbymedicine]

Hope you manage to seek the answers you need. I was misdiagnosed with FND I totally get the frustration.

For me it turned out I had 4 well known and recognised conditions classed as FND. This was after a brief conversation with no tests conducted.

If you believe the diagnosis is wrong keep fighting to find the answer.

Wishing you all the best.

[Koalaas in reply to Shelford24]

Would you mind sharing what those 4 conditions were?

[Shelford24 in reply to Koalaas]

Thee of my conditions a GP could have diagnosed, the other requires reconstructive surgery.

None of them are classed in the medical community as FND.

I hope you find the answers you need regarding your condition.

[Koalaas in reply to Shelford24]

Apologies if my message sounded rude. I just have some symptoms no one has heard of and a complex medical history/ possible long term side effect and it's been a challenge having no answers or treatment options.

[Shelford24 in reply to Koalaas]

Sorry to hear this, it wasn't rude. Are you based in the UK?

If so it might be worth getting a referral to large teaching hospital. I generally find they have a greater wealth of knowledge and might be able to help you. Hope you find the answers you seek soon. Stay strong.

[Linz78S in reply to Gaslitbymedicine]

Spot on

[Milky1991]

I’ve been feeling this way since I started having the symptoms. It’s incredibly annoying and unsettling that it just gets pushed to the side as psychosomatic, or just “happens” based on no real issue. Which makes absolutely no sense to me personally. It’s random, started randomly.. and is still happening like clock work almost all the time.

[Woofie123]

Don’t blame doctors, they aren’t infallible or God . Science has to apply theory to whatever there is evidence and if if there are gaps in evidence, the theory will be shaky.

[Pidge1997 in reply to Woofie123]

I can’t completely agree with the don’t blame doctors response. At least in my case my medical records have been changed from cholitis with high risk of colon cancer to ibs with normal risk which changes how they handle that particular situation. A mishandled bloody tap with comparison to blood that was forgotten to be taken until 8 days later and therefore was not a valid test. A chiari that from their own records is measuring more than 2 years ago in medical records shows has not changed after verifying the increase in measurement. An abnormality in my heart that the test showed existed but not what it was doing the test verifying it had been removed and so the motion specialist stated basically to the effect I was a hypochondriac since it was mentioned but not verified so I just assumed I had it. This is how my treatment has been. A pathologist saw signs of autoimmune they dismissed and refuse to redo the lumbar puncture as medically unnecessary and colonoscopy that was done when I was 35 they won’t do again until 50 with family history of progressive colon cancer in my dad and cholostomy bag in my aunt and cholitis in both sides of my family. These are reasons I do blame doctors because they are not infallible and believe they are. Sorry for my rant but I hate they idea these doctors dismiss us because another doctor has put this on our medical records.

[Gaslitbymedicine in reply to Pidge1997]

This is how I feel, I’m not mad and blaming physicians for not having all the answers, I don’t expect they should. I’m mad that the pretend they do have all the answers and you are wrong to question them. They then slot you in thus category with no scientific medical evidence to prove their theory and then refuse you any further investigation into your symptoms. Leaving the patients with absolutely no recourse or help. Furthermore they stigmatize these patients within the medical community.

[Van604 in reply to Gaslitbymedicine]

If you can get to see Prof Mark Edwards at St George's in London, I would highly recommend. It's a national hospital so they take patients from all over England and even provide transport if you need it. He has a lot of videos on YouTube too, which show that he gets it, and doesn't think we're faking/crazy/hypochondriacs, as so many other medical "professionals" seem to do.

[Woofie123]

Surely there must be pay back in the event of carelessness. You may not make a case against arrogance and callousness, but you can establish mistakes and carelessness as fact.

[Linz78S]

I totally agree. I feel as I've been left to rott. I'm disabled now and getting worse, on my own with 2 beautiful children.My doctor said basically they don't want to spend any more money on you, so until something big comes to light they just leave you on pain management physio etc I've got no trauma from my past either!!!!!

I paid over a grand to be seen private as it was a long wait and he said fnd. So mad.

I don't know what to do.

[Gaslitbymedicine]

Well, it’s official that I won’t get any help. My psychiatrist has decided to end my care because I’m not getting better and she feels that continuing care will only further my problems because I can’t seem to come to grips with the diagnosis. She also states she might have my therapies (speech, OT and PT) decrease my care as well.

[Nansea]

Have stayed off this site for a while, helped hearing others were going through the same thing, but started getting more frustrated. I had FND diagnosis by third neurologist, just because all tests and scans are OK. Was told I can not improve unless I accept it. I can accept it as a possibility, however also feel it is just easier to toss difficult cases there. I am still searching for other possible explanations. The last specialist I saw said he scoffs at the FND diagnosis. Said there is usually an answer, just not found yet. I was just looking for a second opinion. How can I totally accept it when the neurologists do not agree.