Tips for Recently Diagnosed

[CrystalText]

Hello,

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...

[8756]

That seems awfully quick for a diagnosis. I was always told it was also a matter of ruling things out, not just FND in.

[Lady4 in reply to 8756]

Thats correct. FND is a rule in diagnosis. Also, its the Neurologist job to diagnose not the ER professionals.

[CrystalText in reply to Lady4]

I will say they brought in the mov't Disorder neurologist during the ER visits

[Wilson57 in reply to 8756]

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.

[CrystalText in reply to Wilson57]

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?

[RavenFeather in reply to CrystalText]

I see you are in the US. I would like to talk with you if you are interested in nonmedical intervention. I am a behavioral health professional but I am not selling anything. I too was dx with FND and fully resonate with the experiences here. In the similarities of our experiences, I am interested in how others might benefit from what I have found works. So, I am asking a few people if they want to talk.

[Maybecuckoo]

I was given the FND diagnosis along side a diagnosis of PTSD. Since then I've heard nothing and I carry on treating the symptoms but not the origin 🤕

[Wilson57 in reply to Maybecuckoo]

The origin is PTSD, you need someone with FND knowledge to explain what’s happening to your body and why.

[RavenFeather in reply to Maybecuckoo]

I would like to talk with you if you are interested in nonmedical intervention. I am a behavioral health professional but I am not selling anything. I too was dx with FND and fully resonate with the experiences here. In the similarities of our experiences, I am interested in how others might benefit from what I have found works. So, I am asking a few people if they want to talk.

[skeetbeet]

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.

[CrystalText in reply to skeetbeet]

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

[Lady4]

Can I ask, are you symptoms intermittent?

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."

[CrystalText in reply to Lady4]

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....

[Lady4 in reply to CrystalText]

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.

[Wilson57 in reply to Lady4]

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.

[Van604]

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.

[Lady4 in reply to Van604]

Don't forget the centre in Los Angeles. California 😉

[Lady4 in reply to Van604]

I believe if you have the right team, anything is possible 😊

[RavenFeather in reply to Van604]

I appreciate your response. Anything medicine does not understand is contributed to the patient's fault. Today's doctors have no time for compassion. At least we have not been burned at the stake to cast out our devils!

My personal opinion from reading and experience is that physicians have discovered a new convenient label for something they do not understand. They are human; I remember when the magic cure for everything was Clonopin!

I just read an abstract from a journal that I interpreted to indicate our symptoms are so diverse because the part of the brain wiring that misfires is unpredictable from individual to individual. That is one step forward.

[Wilson57]

I’ll check into those places, surgery, illness and stressors all cause flares for sure.

[Shimmyaway in reply to Wilson57]

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.

[Van604 in reply to Shimmyaway]

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.

[Shimmyaway in reply to Van604]

That's good news for Wilson57 .. we are still struggling in the UK to get treatment from a multidisciplinary team. The NHS pathway is unfunded.

[RavenFeather in reply to Van604]

This is the treatment program recommended by researchers. If the treatment were available. I lost the source but have the slides from and excellent presentation acknowledging that areas of the brain are affected. The brain imaging machines are just being developed that can "see" the changes. So, in the future, the world will understand we are not crazy. If there are a few multidisciplinary teams, there is hope.

[Thornlee]

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.

[Lady4 in reply to Thornlee]

My son had drop attacks, thigh spasms and numbness initially. The numbness was I believe was due to increased neuron activity and the signs got so strong that the brain blocked them.

The drop attacks I believe were due to stress and anxiety, yet he wasn't conscious of this (so internal). If you suddenly feel your breathing getting faster, try external breathing tasks and if you feel your temperatures rising try and cooling towel. Or if the classroom is getting too much and you canntake yourself away from the situation, take five mins out.

Ask a loved one if the spot anything before your drop attack, sometimes they are that fast (like seizures) that you just can't stop them but in time you will.

[Thornlee in reply to Lady4]

Thank you, thank you for this. You’ve just helped me nail this, that’s exactly what is happening! The fast breathing, the rise in temp and the feeling overwhelmed yes that’s it. You’ve given me ideas how to better my situation, it’s heat too!!! Thanks

[Lady4 in reply to Thornlee]

Thats wonderful let me know how you get on. There is a graphic book called "Not there" which I think you will find a link on my posts.

I think a lot of it is regulating our nervous system any way that works best for us and if you can add an element of fun into it, even better.