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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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:
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")

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.

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.

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.

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

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.

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

MoonAndStarsAndSky · 19/09/2024 09:46

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

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.

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.

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.

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

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 10:31

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

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!

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.

CassandraWebb · 19/09/2024 11:02

Twistybranch · 19/09/2024 10:52

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.

That's not how it should work. Agreed.

But in my experience and that of many others that is unfortunately how it often does work.

I was quite happy to accept the symptoms were psychological when doctors insisted and I accepted put up with them for a long time. I am incredibly cross to now find they were entirely treatable. Likewise the people I know who ensured "IBS" for years only to find out they had coeliac.

CassandraWebb · 19/09/2024 11:09

Sorry, my first sentence should say "that is how it should work"

YOYOK · 19/09/2024 11:14

Twistybranch · 19/09/2024 10:52

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.

I agree with your last paragraph. In general, there is still a stigma around mental health and psychological health disorders.

However, it is dangerous to rule of physiological causes of neurological symptoms based on the very basic tests in A&E. They have ruled out of the common, major life threatening causes of symptoms which is good news. They need to rule out other neurological causes too.

Whatspots · 19/09/2024 11:26

although I wish people weren’t giving this lady an armchair diagnosis of FND it’s good to see how much more aware people are of it but equally how many misperceptions exist, for eg, it’s not a disease as someone has said. Western medicine is very good at dividing the brain from the body but it’s more helpful to see ourselves as a whole amazing system. We all have a “ fight, flight or freeze” response…a rabbit caught in a field has the option of running for its life or freezing in the hope the predator will pass by….the rabbit isn’t paralysed in this instance, its system has decided the best chance of survival is to freeze until danger has passed. As a physio if I went to see a person who was paralysed or had stroke symptoms, that person with FND would TRULY not be able to move the affected limbs if I asked them…but if I moved that limb or if I tried to stand that person ,their automatic functions might kick in and help,whereas with someone with a massive stroke or paralysis resulting from a spinal cord injury, that would not happen. The latter group, if you put them in bed would still be in the same position when the nurse comes to turn them; someone with FND may have changed position because their automatic responses have kicked in during sleep. We need to be incredibly carefully of presumptions when it comes to making diagnosis …as someone has said upthread ,many people get missed diagnoses of all sorts of conditions because a judgement is made on face value, and bias against certain groups ( women,ethnic minorities,the elderly etc) is very real!

Efacsen · 19/09/2024 11:39

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.

In what way is it surprising/unexpected that there would be MRI changes in the amygdala given it's role in in mediating emotions? Could it not be a reflection of emotional distress?

pissedpocket · 19/09/2024 12:39

Efacsen · 19/09/2024 11:39

In what way is it surprising/unexpected that there would be MRI changes in the amygdala given it's role in in mediating emotions? Could it not be a reflection of emotional distress?

I didn't say it was surprising or unexpected. Yes, it's no surprise the amygdala is involved. This could be useful information as part of diagnostic tests in the future, especially for those that may have had functional symptoms for extended periods of time without a diagnosis so far. Or it may be too complicated to ever get to the bottom of FND. Who knows! But like IBS, the more research and awareness there is the better.

I appreciate people's willingness to try and understand something that is really misunderstood. I myself may be completely wrong about how I understand my FND. And I agree, no one should armchair diagnose anything. I hope OPs friend gets the answer she needs.

supportpangolin · 19/09/2024 13:25

For those who keep repeating that a CT scan will rule out a stroke:

CT scan won't always reliably rule out an ischaemic stroke (due to a blood clot).

Sometimes a stroke won't be visualised on a CT scan if it is carried out within a few hours of development of stroke symptoms. Whereas an MRI undertaken later will show the areas of damage and may also show evidence of historical damage from "silent" strokes which the patient had not been aware of at the time.

In our experience, patients referred to rapid assessment stroke units are often given a CT scan within a couple of hours after presentation and this is followed by an MRI several weeks later.

A CT scan may differentiate between an ischaemic stroke or a haemorrhagic stroke and guide rapid treatment.

NHS:

https://www.nhs.uk/conditions/stroke/diagnosis/#:~:text=If%20a%20stroke%20is%20suspected,to%20receive%20appropriate%20treatment%20sooner.

"If a stroke is suspected, a CT scan is usually able to show whether you have had an ischaemic stroke or a haemorrhagic stroke. It's generally quicker than an MRI scan and can mean you're able to receive appropriate treatment sooner."

supportpangolin · 19/09/2024 13:30

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

Patients with ME and Long Covid are also sometimes incorrectly re-diagnosed with FND by neurologists.

supportpangolin · 19/09/2024 13:38

https://www.seattletimes.com/nation-world/study-ct-scans-often-miss-strokes/#:~:text=The%20scans%20were%20independently%20interpreted,26%20percent%20of%20the%20time.

The most common method of diagnosing a stroke in emergency rooms catches only about one out of every four cases — far fewer than an MRI scan, which also was better at spotting the type of stroke, a U.S. government funded study showed...

...Chalela and colleagues examined 356 patients, of whom 217 were ultimately diagnosed with an acute stroke. Patients were scanned both by CT and MRI machines. CT scans are a type of X-ray, whereas magnetic resonance imaging uses powerful magnets instead of radiation to produce an image.

The scans were independently interpreted by four experts, who had no other patient information. Based only on the MRI scans, experts accurately diagnosed acute strokes 83 percent of the time. Using the CT scans, however, they were right just 26 percent of the time.

MRI scans were also more precise in spotting the cause of the stroke — a blood clot or bleeding in the brain. The vast majority of strokes are caused by clots. In patients scanned within three hours of symptoms, MRIs detected strokes caused by clots in 41 of 90 patients, while CT scans picked up only six of the 90 patients.

The first few hours after a stroke are critical, since clot-busting drugs must be given within three hours to have a real impact. If they are given to the wrong patients, however, death or severe disability can result.

--

Can posters please stop saying that a CT scan will "rule out a stroke".