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Suddenly can't move legs

216 replies

Whitfloor · 18/09/2024 14:52

My friend had a general anaesthetic two days ago (her first) to correct a minor problem. She seemed fine. She's in her late thirties.

Two hours ago she felt very sick and became unable to stand. She became unresponsive. No raised temperature. An ambulance was called.

Waiting on a CT scan. She can't move her legs.

She was frightened about the possibility of having a reaction to the anaesthetic. Could this be a delayed reaction?

Reduced sensation in all four limbs. SATS fine throughout. Now perfectly clear mentally but passed out for a while in the ambulance.

What could be happening?

OP posts:
Twistybranch · 19/09/2024 10:52

CassandraWebb · 19/09/2024 10:28

IBS being another good example actually, I was told for years I have IBS and it is just psychological. There is now an abundance of research showing that Myasthenia (which I am now diagnosed with) can also cause issues with the digestive system.

It feels a bit medieval to just dismiss anything where the physical cause isn't immediately identifiable as psychological

That’s not how it works though. It’s only after other conditions have been excluded, that this is the conclusion taken. It’s not an immediate diagnosis if you can’t find an underlying medical reason.

Lots of posters on here, overly sensitive to this issue of it being psychological and are projecting.

The symptoms are just as real, the pain and discomfort- regardless if it psychological or a medical condition. The denial and rejection of it being labeled mental health, just further prolongs the problem. Acceptance is key to any treatment.

pissedpocket · 19/09/2024 10:43

CassandraWebb · 19/09/2024 10:25

This has nothing to do with stigma and everything to do with people missing out on their actual diagnosis because hard to solve neurological symptoms are just dumped in the "FND" bucket.

I know so many people (as a result of my condition) who went without treatment for years because they were wrongly diagnosed as having FND.

Or take a look at "thattillyrose" on Instagram, who was told time and again that doctors couldn't find a cause so it must be psychological and yet now doctors have been able to pinpoint that there are very real physical causes.

It's not about stigma it's about the lack of curiosity that leads to missed chances for treatment

Absolutely, FND should not be the catch all "for things we can't explain" and all avenues need to be explored. It is possible for FND to be comorbid with other conditions. And this is why I am not a Dr!

CassandraWebb · 19/09/2024 10:31

And actually, while we are on the subject of IBS, I know quite a number of people who spent years dealing with "IBS" and being told it had a psychological cause before getting very ill and doctors finally realising they were coeliac. Maddening.

Again, nothing to do with stigma, but a lost opportunity to have good health

CassandraWebb · 19/09/2024 10:28

IBS being another good example actually, I was told for years I have IBS and it is just psychological. There is now an abundance of research showing that Myasthenia (which I am now diagnosed with) can also cause issues with the digestive system.

It feels a bit medieval to just dismiss anything where the physical cause isn't immediately identifiable as psychological

CassandraWebb · 19/09/2024 10:25

pissedpocket · 19/09/2024 09:36

There was a fMRI study a year or so back that showed changes in the amygdala of FND patients. The FND hope website has it referenced. I also just found this one published this year about blood oxygen. Admittedly it could be that these changes come after the onset of FND rather than before. The research is all new and small scale and the disorder is very varied in symptoms.

In response to other posters. Yes, FND has a psychological part. All humans experience functional neurological symptoms FNS (sleep paralysis, being so angry you stutter/splutter/can't talk, blushing because you feel embarrassed, shaking or trembling after shocking news, bowl issues when nervous). It's when it goes out of whack and turns into full blown FND (or IBS) and impacts the quality of people's lives.

Just like anyone with psychological distress or poor mental health is going to feel worse when they are physically unwell, psychological distress and poor mental health or trauma will make functional symptoms worse, and possibly turn it into a full blown disorder, though not in all cases.

Positive diagnostic criteria such as the hoover test, or tremor entrainment should be combined with significant recent or historical psychological factors if relevant. But, all other possible causes of what is happening should be investigated too.

Also my favourite thing to remember is that the placebo effect is very real, but not stigmatised, FND is very real but very stigmatised by a lot of people.

This has nothing to do with stigma and everything to do with people missing out on their actual diagnosis because hard to solve neurological symptoms are just dumped in the "FND" bucket.

I know so many people (as a result of my condition) who went without treatment for years because they were wrongly diagnosed as having FND.

Or take a look at "thattillyrose" on Instagram, who was told time and again that doctors couldn't find a cause so it must be psychological and yet now doctors have been able to pinpoint that there are very real physical causes.

It's not about stigma it's about the lack of curiosity that leads to missed chances for treatment

Crikeyalmighty · 19/09/2024 10:23

By the way FND isn't 'all in your head' as in totally in your imagination- it is indeed 'in your head' but to do with how brain is translating things ( or not) in the nervous system rather than a failure of a particular part and feels very real because it is real.

BantamBanter · 19/09/2024 10:14

Twistybranch · 19/09/2024 04:01

This is completely unhelpful

The OP has stated that she has been tested and everything has come back clear

Haven't seen that update, sorry you think I was unhelpful. I know how frustrating it is in ED with the “we don’t know, but you’re not dying” approach. The lack of timely investigation often leaves gaps that primary and tertiary services later have to address. It's frustrating for everyone.

I doubt OP’s friend has had all those investigations or results yet. Given current clinical prioritisation, it's impossible in that timeframe. Only routine tests like a CT and bloods have likely been requested and come back (probably normal electrolyte panel ruling out hypokalemia as I said, though thyroid likely wasn’t checked). A CT scan would only rule out obvious issues like stroke or major injury. MRI is much better for detecting things like inflammation, vascular problems, or demyelination. Bloods and CT aren't sufficient—a neuro consult would result in further investigations.

OP – It’s likely paramedics did an ECG due to the loss of consciousness. If any BP or ECG abnormalities were noted, that would explain the autonomic involvement (nausea and syncope).

It’s good to hear there’s been improvement. Without more detail on bladder/bowel involvement, muscle tone, reflexes, or the extent of paralysis, it’s hard to say more, but based on what you’ve said, if no treatment like steroids has been given and she’s improving, it could suggest transient spinal cord ischemia from a sudden drop in blood pressure. This could explain the nausea, syncope, and resultant motor and sensory dysfunction in the limbs, likely affecting C4 to C8 based on the pattern of nerve involvement. Cervical spine isn't the most commonly affected region but it's certainly possible. I suggest this because gradual spontaneous recovery indicates the nerve roots are healing.

Whatever it is, she definitely needs an MRI and it would be negligent of them not to request one even if she is improving.

Fingers crossed for action and further improvement today.

ladycardamom · 19/09/2024 10:10

BirthdayRainbow · 18/09/2024 23:10

It's scary how much stuff is posted on here with such confidence when it is nonsense.

My thoughts exactly.

MoonAndStarsAndSky · 19/09/2024 09:46

Didn't Ronan Keating's wife suffer something similar?

pissedpocket · 19/09/2024 09:36

MyKidsAreTooNoisy · 18/09/2024 23:04

Yes please link to this reported new evidence @pissedpocket ! I think you must have misinterpreted it somehow.

There was a fMRI study a year or so back that showed changes in the amygdala of FND patients. The FND hope website has it referenced. I also just found this one published this year about blood oxygen. Admittedly it could be that these changes come after the onset of FND rather than before. The research is all new and small scale and the disorder is very varied in symptoms.

In response to other posters. Yes, FND has a psychological part. All humans experience functional neurological symptoms FNS (sleep paralysis, being so angry you stutter/splutter/can't talk, blushing because you feel embarrassed, shaking or trembling after shocking news, bowl issues when nervous). It's when it goes out of whack and turns into full blown FND (or IBS) and impacts the quality of people's lives.

Just like anyone with psychological distress or poor mental health is going to feel worse when they are physically unwell, psychological distress and poor mental health or trauma will make functional symptoms worse, and possibly turn it into a full blown disorder, though not in all cases.

Positive diagnostic criteria such as the hoover test, or tremor entrainment should be combined with significant recent or historical psychological factors if relevant. But, all other possible causes of what is happening should be investigated too.

Also my favourite thing to remember is that the placebo effect is very real, but not stigmatised, FND is very real but very stigmatised by a lot of people.

Psychological Treatment - FND Hope International

https://fndhope.org/fnd-guide/treatment/psychological/#:~:text=Experiments%20looking%20at%20brain%20activity,involved%20in%20initiating%20or%20planning

Codlingmoths · 19/09/2024 09:27

Twistybranch · 18/09/2024 20:18

Symptoms of psychological disorders are very real. They are no less real than if they were symptoms from an underlying medical condition.

equally, the patient needs treatment for both the symptoms and the root cause.

Women are also much more likely to experience severe anxiety

Psychological symptoms may well be no less real than disease /physical condition symptoms. The symptoms are however considerably less well treated when they are real physical conditions dismissed because it’s a woman, and that has happened a lot. It would be silly to ignore that.

CassandraWebb · 19/09/2024 09:22

Oh and another example, I had a nasty duodenal ulcer in my twenties and kept getting discharged from a &e who would decide I was just being dramatic. Yet once I was diagnosed (by endoscopy) I realised I had been really precisely describing the symptoms of an ulcer to every doctor I saw.

I am not criticising doctors, medicine is hugely complex and I never expect instant diagnosis but we have to get away from this idea that where an immediate cause can't be found it must be that the woman (and it is always women treated like this) is just stressed /anxious

CassandraWebb · 19/09/2024 09:18

YOYOK · 19/09/2024 08:59

Absolutely. The brief tests done in A&E almost certainly did not include nerve studies or antibodies for neurological diseases. Even if they did, it takes weeks to get blood test results for certain diseases.

Exactly.

Supernaturaldemons · 19/09/2024 09:18

Twistybranch · 18/09/2024 20:02

People on this thread, desperate for it to be something sinister. It’s macabre.

The doctors have said it’s psychological, believe them

You clearly have no idea how many people, women in particular, have suffered for decades from illnesses that were written off as ‘psychological’ when they in fact are very much physical.

M.E, fibromyalgia, Ehlers-Danlos syndrome, endometriosis, Cushings etc- I could go on all day.

YOYOK · 19/09/2024 08:59

CassandraWebb · 19/09/2024 08:40

"everything back clear" is very dependent on what they tested for and how accurate those tests are

(Speaking as someone who was definitely very unwell but kept being told I wasn't because my "blood tests are normal")

Absolutely. The brief tests done in A&E almost certainly did not include nerve studies or antibodies for neurological diseases. Even if they did, it takes weeks to get blood test results for certain diseases.

CassandraWebb · 19/09/2024 08:40

Twistybranch · 19/09/2024 04:01

This is completely unhelpful

The OP has stated that she has been tested and everything has come back clear

"everything back clear" is very dependent on what they tested for and how accurate those tests are

(Speaking as someone who was definitely very unwell but kept being told I wasn't because my "blood tests are normal")

CassandraWebb · 19/09/2024 08:37

schloss · 18/09/2024 21:43

Your friend, or someone advocating for her, must insist on seeing a neuro consult. FND is a convenient diagnosis, and for some, is not considered a diagnosis at all. GBS is a possibility, as are plenty of other things - time is of the essence to ensure no further damage or normality is not resumed. Do not accept it is psychological until everything else is investigated by a neuro team.

Totally agree. Any doctor leaping to the psychological conclusion at this stage is a lazy/dangerous doctor. Just because they aren't sure what the cause is, it doesn't mean there isn't one

(My advice as someone who was told my symptoms were stress etc for 20 years before being diagnosed with Myasthenia (which can cause bad anaesthetic reactions but I don't think they would present like op's friend's one)

I hope she gets answers soon

Destiny123 · 19/09/2024 08:32

Whitfloor · 18/09/2024 21:04

They haven't come out and said it. They've just implied that there are a limited number of things it could be as if it's not any of those, well...

I just feel it's so close to the anaesthetic that something to do with that is more likely than a psychological reason as that is so rare and she has navigated poor mental health without that manifesting before. I'm fully aware that to say it's psychosomatic is not an insult, it can happen to anyone and it's very real. But my family member had very similar symptoms and it was not psychosomatic and they were too slow.

Doesn't sound like any GA reaction I've heard of in 10y as an anaesthetist. The drugs will be long gone at 48h

Greybeardy · 19/09/2024 08:10

To be fair to the HCPs involved though it sounds like they haven’t said they think it’s a psychological problem - in the OPs words ‘They haven't come out and said it. They've just implied that there are a limited number of things it could be as if it's not any of those, well...’. Without being able to see the exact pattern of neurology no one on here is in a position to comment on what could be causing it - no one on here can even can even say if this looks like a central or peripheral nervous system problem so can’t even begin to narrow the differential and some of the suggestions upstream are frankly absurd. It does sound like the HCPs are starting with sensible investigations and taking it seriously, but sometimes time and observation are also really important in helping to narrow things down and chose the next steps.

Yeahno · 19/09/2024 07:46

When the doctor starts to say "we don't know what it is. It is in your head" to symptoms like that, I'd be off to get help from wherever else too.
The doctors are always righters will tell you to go away and trust your doctor. Saying that to someone who has witnessed what happens when the doctor get it wrong isn't reassuring.
OP's friend doesn't seem to be antidoctor or antimedicine. When something is not adding up a healthy scepticism can save someone life. If what you find matches what the doctors are saying, great. If not, I would be thinking what if the doctor is wrong.

OrangeCarrot · 19/09/2024 06:45

As someone that works in medicine these kinds of threads are terrifying to read with the amount of misinformation and terror stirring.

It’s so clear that most commenters that spew their medical thoughts know little about what they are talking about but post as if they are an expert.

It sounds very much like the doctors are taking her seriously by the tests OP has mentioned and the fact they are keeping her in overnight.

I think people forget that in the vast vast majority of cases healthcare workers try their best. When they are faced with symptoms that don’t fit a certain clinical picture they do further tests and get other specialist opinions.

Of course diagnoses will be missed at times because medicine is hard and everyone presents differently, but I promise you that no doctor wants to miss a diagnosis.

The sentiments we see on this thread are exactly why UK medicine has become so defensive. Defensive medicine is one of the major reasons that the NHS is so unsustainable as doctors order expensive tests after expensive test instead of practicing evidence based medicine.

Aussieland · 19/09/2024 05:19

BantamBanter · 19/09/2024 01:43

This is not psychological. This is what medics say when they don't know what it is and haven't consulted the relevant specialist. She has neurological symptoms, she needs a neurologist. People are far too trusting that doctors a) know enough and b) know when they don't know enough.

Quadriparesis/quadriparalysis, syncope and sleep myoclonus is not going to be a manifestation of a psychological disorder. It's a central nervous system issue.

It could be many things, they need to test her reflexes and muscle tone and do an ECG. Wait for the blood tests to come back and if it's not an electrolyte imbalance do nerve conduction studies or EMG, lumbar puncture, a spinal MRI not CT.

It could be post surgical hypokalemia (low potassium). Hypokalemia is common in anyone after surgery. Her potassium would have to be VERY low to cause symptoms this severe, but it fits everything. Nausea, syncope, quadriparalysis, parasthesia, myoclonus. If they did an electrolyte panel, which they should have done, this should be obvious. And simple to treat.

Another strong maybe is transverse myelitis. Would expect some bladder and bowel involvement, though. If the electrolytes come back normal then starting precautionary steroids while waiting for diagnosis would be a reasonable decision.

It could be rapid onset GBS. In which case, they should also check her thyroid function because this can be a trigger alongside coinciding factors. In fact, her presentation is quite text book for this with nausea and syncope and quadriparesis/paralysis upon rousing. Not so much the myoclonus though.

Could even be radiculitis/CNS infection if there was infection in the ear and it reached the CNS due to surgical disruption. Especially if her surgery was for chronic otitis media or involved the mastoid bone.

Whatever it is, it is not psychological. Hope she gets an answer soon.

It might be psychological. Of course everything else has to be considered and it could be any number of things but YOU have no idea if it is or not unless you are her treating team

marmaladian · 19/09/2024 04:38

My friend was told she had GB for a year. They were wrong she had MND. Sorry to be the bearer of bad news but maybe a possibility?

valentinka31 · 19/09/2024 04:34

BantamBanter · 19/09/2024 01:43

This is not psychological. This is what medics say when they don't know what it is and haven't consulted the relevant specialist. She has neurological symptoms, she needs a neurologist. People are far too trusting that doctors a) know enough and b) know when they don't know enough.

Quadriparesis/quadriparalysis, syncope and sleep myoclonus is not going to be a manifestation of a psychological disorder. It's a central nervous system issue.

It could be many things, they need to test her reflexes and muscle tone and do an ECG. Wait for the blood tests to come back and if it's not an electrolyte imbalance do nerve conduction studies or EMG, lumbar puncture, a spinal MRI not CT.

It could be post surgical hypokalemia (low potassium). Hypokalemia is common in anyone after surgery. Her potassium would have to be VERY low to cause symptoms this severe, but it fits everything. Nausea, syncope, quadriparalysis, parasthesia, myoclonus. If they did an electrolyte panel, which they should have done, this should be obvious. And simple to treat.

Another strong maybe is transverse myelitis. Would expect some bladder and bowel involvement, though. If the electrolytes come back normal then starting precautionary steroids while waiting for diagnosis would be a reasonable decision.

It could be rapid onset GBS. In which case, they should also check her thyroid function because this can be a trigger alongside coinciding factors. In fact, her presentation is quite text book for this with nausea and syncope and quadriparesis/paralysis upon rousing. Not so much the myoclonus though.

Could even be radiculitis/CNS infection if there was infection in the ear and it reached the CNS due to surgical disruption. Especially if her surgery was for chronic otitis media or involved the mastoid bone.

Whatever it is, it is not psychological. Hope she gets an answer soon.

I love you. This is a proper answer.

DreamTheMoors · 19/09/2024 04:03

I know your friend is worried and I know you are, too.
I’m not a doctor. I’ve never even played one on tc. I haven’t a clue what could be causing your friend’s paralysis, but I’m hoping the doctors will come to a conclusion sooner rather than later.

I had spinal surgery years ago and the first thing they did when I woke up was test my reflexes and whether I could bend my legs. I’d been on my back in that hospital bed for 30 days, but I think it was two or three days after my surgery that I was up and walking.

I wish that sort of recovery for your friend, @Whitfloor— sending love.