I am a 51 year old male who has recently (10/24) been diagnosed with FND a couple of weeks after I had hiatal hernia repair. I presented to the ER short of breath and limping/spasming. Turns out the breathing was pulmonary emboli, but the gait stuff and numbness was referred to Neurology. Amazing irony--the discharge paperwork says to see Neurology with 5 days (!) and the nearest appointments are 6 months out.
Numbness got more severe and I had trouble with incontinence and stuttering, so I went back to the ER and they did a full work up and concluded FND. Of course this was all delivered in the most ham-fisted, gaslighting, it's all in your head kind of manner.
I should mention I went into the surgery healthy, fit, active father of three girls. I came out hardly being able to walk...
My questions:
1) I am severely limited in my movements (gait on left side is draggy) and have difficulty working especially if I have to stand for periods of time which makes me tremor and bounce quite noticeably--is this something that gets better, or do I need to adjust expectations of ever working the same way again?
2) I am totally numb in my stomach and saddle area on both sides and wet myself (is that an FND thing as well?)
3) Facial numbness (like Novocaine) & generalized numbness on hands, arms, trunk (Is that FND?)
4) Weird fine-motor stuff--when I use my fingers I can freeze up and just kind of bounce there for a bit, or I'll stutter and freeze (Again--FND?)
This is such a strange new world... Do I need to worry about this being something else if they've done the spine MRIs, lumbar punctures, nerve conduction &c? I think that's a big part of me not fully accepting FND yet... any guidance and wisdom much appreciated! All bests...
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That does seem awfully quick to diagnose that. I have all of those symptoms and even more if you can believe it. Every time I have surgery or an illness or infection, I have a huge relapse where I loose all body control have to go through home therapy and nursing, always am left at a couple steps behind. They say it isn’t life threatening, mine gets worse with any trauma to my body. I also have epilepsy. It took 3 years for my diagnosis and some of my testing was psychiatric testing. I found an excellent home therapy company that is familiar with the disorder and have helped so much understanding FND.
Thanks so much for your insight... sorry hear about all your troubles. Interesting connection to surgery or infection... I have wondered if there isn't a covid-19 connection as well. Got quite sick twice before vaccines and have had long-haul symptoms since. Combine that with a surgery and perhaps that's what exacerbated?
Sounds like the hospital is trying to protect themselves from legal liability for botching you body during surgery by slapping a psych diagnosis (FND previously called "Hysteria" & Conversion Disorder") on you. I'd get an attorney before statute of limitations to sue them expires.
I get that for sure... & I must say trying to get second opinions from other neurologists in the area once FND is on the books from the big hospital here in town is nigh impossible... I guess I'm open the possibility of FND, but the coincidence with pretty invasive surgery is at least odd
One of the things I would say and this is the hard bit, try not to pay attention to your symptoms, eg dragging leg, focus on something else (external focus).
Another member David on here said it happened to him recently when out walking and he focused his attention on something else (think it was his other leg) and clicked his fingers and it stopped. I will see if I can find the post.
Here it is:
"Your not alone , I had a average day of various symptoms, tonight out for a walk FND kicked in an my right foot drops and drags , if I except it stay calm focus on the good leg , snap my fingers after a while it settles. If I get anxious or try to push through, I get a meltdown. Sometimes, I freeze and struggle to walk at all."
Thanks for the reply... symptoms are definitely not intermittent... and yes David is right hyper-focus on the symptoms like when walking does make it worse....
Try some of the external focus techniques 5,4,3,2,1 for example.
Sometimes FND is triggered by a series of events (and sometimes you struggle to find any) and maybe the last being less significant, the river run overeth springs to mind.
Medical trauma too can be a trigger. If you are experiencing your numbness all the time, then I would question whether that is related. Although that said, I looked at failed repairs and couldn't see that as sign.
When my son had CRPS leg spasms and numbness, alternating symptoms on the same day/or on different days they usually disappeared when the school day was over.
Exactly, I’ve crossed the line to severe weakness after so many years of physicians telling me I was out of shape, lose 20 pounds you will have more strength. They were all wrong. The more I push the brain connection the worse it gets. If I use a Walker and keep the weight off my legs I can walk fine. My diagnosis is FND with mixed symptoms. I have intermittent paralysis, and central apnea. I’ve also had Epilepsy my whole life.
The truth is, no one knows what FND really is, what causes it and what will help/cure it in any individual. It's trial and error. The best doctors will admit that. One told me they haven't invented the test yet that can see it, just like they thought MS was psychological until they invented the MRI. In the meantime, they look for certain factors that suggest it, like the Hoover test and distractability. These aren't unique to FND though. Mine came on after back surgery. Same story - I was working full time and hiking in the mountains at weekends before; after I couldn't walk in a straight line. It's quite common for it to come on after illness or surgery or any other shock to the system, including PTSD (but not always). If yours is movement-based, it's really important to get specialised FND physio as soon as possible. You have a brief window of opportunity to retrain your brain - if you leave it, it's a lot harder, if not impossible. Unfortunately for me, I was instead sent to a neuropsychiatrist who believes it is entirely psychological, so I missed my opportunity for improvement (plus being gaslighted was no fun). If you google Jon Stone and Mark Edwards, they are the experts in it. It looks like you're in the US - Mass General has a good FND unit and somewhere in Kentucky I think. Best of luck.
I think 210272 posted that the centre in Mass General, (main researcher D Perez) is still of the opinion that FND is more psychological than most others now think . REACT in LA has outreach centres, and seems altogether more practical and accessible in its approach. There is a directory available.
This from Mass General FND clinic website:"Our clinic is also multidisciplinary – this means that after your initial visit we recommend components of treatment based on your needs. Personalized, short-term (time-limited) treatments we recommend can include:Physical therapy
Occupational therapy
Speech and language therapy
Skills-based or problem-focused psychotherapy, such a cognitive-behavioral therapy (CBT)
Group psychotherapy (pilot program)"
So treatment is based on individual patient needs.
Last December I had a major life trauma. I felt increasingly tired until July this year collapse after collapse and intense pain in right side followed by paralysis in left. Yes - stuttering and incontinence are now part of who I am. Drop attacks and numbness. I am 47. I am sorry to read your story. I understand, I walked the hills and all over Ayrshire, travelled miles for rugby.
I did these things. I understand. I still work in education but feel hugely impacted. I was diagnosed on 13/10/24. I am now looking at applying for benefits to help get a cleaner. I am the age I am and have a care call alarm installed by local council and toilet aids etc.
I am positive in mindset but pragmatic. God bless.
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