Misdiagnosis : I’m attempting to write... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Misdiagnosis

Gaslitbymedicine profile image

I’m attempting to write a book about FND diagnosis and the “quackery” I find it to be as a healthcare professional for 20 years and I am interested in hearing others stories and people who have been diagnosed after receiving the Covid19 vaccination. If you feel like sharing I’d appreciate it.

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Gaslitbymedicine
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210272 profile image
210272

Worth having a look at this if you haven't already seen it - it is another example of the 'appalling contempt' projected onto patients by certain neurologists when giving this diagnosis. I feel that a public enquiry into how FN(C)D is diagnosed and communicated to patients is long overdue.facebook.com/NeurologicalAl...

Also when the recent subtypes paper was published Stone tweeted about 'dustbin' diagnoses and then belittled the experiences of people who have been on the receiving end of them by using an exclamation mark. I get where he's coming from and what he's trying to do to change attitudes and improve access to services for people with FN(C)D but unless he does a lot more to weed out the rotten apples who are 'doing it wrong!' (to quote him), neurology will be brought into disrepute and that's not fair on decent neurologists like mine.

I don't know about people who have been diagnosed with FN(C)D after receiving the vaccination but there is a group (I think they are called Patient Voice) who have published about medication triggered onset. And there was a tweet from a post Covid patient who was diagnosed with FND in London, which you may have already seen.

Gaslitbymedicine profile image
Gaslitbymedicine in reply to 210272

Thanks for your reply, I will look into it.

Side note for anyone I don’t respond to but I keep getting blocked from responding but I am able to read your post so please know I’m taking everything everyone says to account

User being blocked from responding to posts

Hello Gas,

A suggestion for your book possibly. FND affects many people not just with the vaccine. I myself do not have it and the symptoms were and are so bad, I lost my job, nearly ended up homeless, and was almost laughed out of every Dr office.

That being said, my current Dr is helping diagnose me better by testing a medication that is helping me a lot.

Goodluck on your book. If you'd like to hear my experience even without the vaccine, feel free to reach out.

Best,

Matt

Gaslitbymedicine profile image
Gaslitbymedicine in reply to

I would love to hear your story. I want to give a voice to the voiceless. It doesn’t have to be related to vaccination, I just have heard of people who have been diagnosed with FND after it and I want to give them a voice too as in some ways it seems their voices are even more suppressed. My own story is not vaccination related. But my diagnosis, the pandemic and my 20 year career as an ER nurse has obliterated my belief in modern medicine, especially in the field of neurology

in reply to Gaslitbymedicine

Hey Gas,

Oh wow... I'm so sorry to hear about your 20 career being stripped from you.. I never had a career that long, but I understand because I lost my job from it.

When would be a good time to tell my story? I have made pretty thorough posts about my history. But if you'd like something more personal, please let me know.

Best,

Matt

Brokendeer profile image
Brokendeer

Hi I did not have any increase in my Motor FND symptoms when having the Covid 19 Jab and although some have had reactions it would be very difficult to prove?

The NHS official explanation of the `cause' of all FND (years ago) was either; a Physical or Mental trauma of which the Brain had not fully recovered. These physical Brain path alterations create confusing feedback signals from the body - thus causing a Brain processing overload and the incredibly varied symptoms experienced by FND Sufferers.

So in theory the stress of Lockdowns, instant unemployment, loss and/or illness of loved ones due to Covid/Flu Season or the risks of possibly catching Covid 19 itself - could well fall into the NHS trauma trigger group for FND in suspectable individuals anyway.

What I will say, is I understand all the Covid 19 vaccines worked on changing the structure of T-Cells, these are Thyroid controlled cells and any shift in the Thyroid can cause either Hypothyroid or Hyperthyroid and other autoimmune issues - which carry different rates of metabolic disorders throughout the body. And any Thyroid driven condition can take time to either settle down back to normal or indeed sometimes take years to diagnose. So there is that in the mix to muddy the FND possible diagnosis too.

Good luck with your book.

Look for the calm in the Storm!

Bumblebee004 profile image
Bumblebee004

Hi I've been (mis)diagnosed with FND following covid vaccine last Jan. Within 10 mins of the vaccine I had an internal shaking on my left side from head to toe. Then developed severe photophobia and left sided muscle spasms in my arm and torso. I was treated with adrenaline that didnt really work and then taken to the hospital via ambulance. In A+E the consultant said I was having an acute dystonic reaction and treated me with iv procyclidine which worked within 5 mins. Following this I have had multiple attacks of the same nature, almost always when my body is recovering from a cold/illness of some sort. After the acute attack I'm left with left sided weakness/paresthesia/numbness for weeks that eventually gets better. I've been to A+E multiple times, each time treated with the procyclidine which always works. Now after an mri of brain and spine (without contrast), a lumbar puncture, and various blood tests my diagnosis is FND. I've been told not to take the procyclidine anymore or the chlorphenamine (another anticholinergic that also works) because, according to the neurologists it absolutely cant be helping my symptoms (more like doesnt fit their shite diagnosis). Laughable.

Mattie21 profile image
Mattie21

That's exciting, a book!

I obtained my symptoms following taking a corticosteroid dexamethasone for a newly identified tumour. I was sad to have neurological symptoms afterwards but as my gp put it I could have died without medication to reduce swelling.

Big picture wise, I know I had an underlying vulnerability and difficulty tolerating medications historically, but I felt like when I flagged this my concerns were brushed off and I was put on standard dosage regime which wasn't revised even when things were clearly going wrong. I self discharged two nights after having brain tumour surgery because I panicked and felt that I was going to be pressured or forced to continue taking the medication at the same dose even when I hadn't slept more than 10 hours in the space of five days. This severe sleep deprivation to me was now more dangerous on balance of advantages to the medication in this instance. After my admission, I came across the hospital procedure which does indeed say that corticosteroid dosage should be reduced or even ceased if it is not tolerated.

I imagine a world where fnd is better understood and acknowledged.

That conversations between medical professionals and patients are filled with mutual respect.

That doctors listen to their patients, follow hospital procedures, and deliver true individualised care.

That when things go wrong, there is assessment, diagnosis, acknowledgement, apology, and support to access services that can help. That they actively revise their practices to suit vulnerable patients in future.

That patients can also see that practices that were performed on them have been performed on many many patients before without that degree of mishap, that it was in part an unfortunate situation (albeit one that could have been handled better in future).

That patients can be given expert support to identify triggers and better pinpoint and manage lifelong hyperarousal, sensory difficulties, social difficulties/difficulties setting boundaries, possible genetic factors, that led to being a vulnerable patient or sitting duck for FND in the first place.

Its claimed that seeking medico-legal compensation is a driving factor for fnd. That isn't what the problem is. It's that the medical profession isn't acknowledging, responding or adapting fast enough to those whose needs don't fit the cookie cutter mould.

That we have good research data so that people can have better tailored vaccinations/surgery/drug protocols, or be in a better position to calculate the risks and benefits of the intervention, or ways of adapting to ameliorate harm.

Hope all goes well with the writing!

210272 profile image
210272

It might be worth hooking up with the Long Covid Body Politic group. I think admins etc are very cautious about posts regarding the vaccine (understandably) which could be why you've been blocked from replying but if you contact HU they should be able to talk you through why people get blocked sometimes. Meanwhile I've seen several articles about 'the great gaslighting' re long covid (I think there was one in The Guardian) which might be of interest to you. Also The Mighty and Patient Worthy could be good sources for additional material.

Prosaic_One profile image
Prosaic_One

When I saw this post I was immediately hopeful that there was a medical professional who’s examining this diagnosis and the “treatment” us patients receive!

Sorry to hear it’s only in relation to the vaccine. Due to all the traumatic events doctors have helped create for me, I’ve completely stopped going to my doctors. I have panic attacks anytime I need to interact with them. I was originally diagnosed with MS (for 13 years!) and when they diagnosed me w/FND, I thought it would mean I could actually start to heal. Instead, I’ve suffered numerous medical assaults and none of my doctors seem to care that I’ve lost my identity through their lack of compassion.

If my story could possibly be of any use to you, I’d be honored to have a conversation. I’m 41 and I’ve been disabled since 28. My doctors’ approach seems to be leaving me on my own to find answers & do research, while simultaneously judging me harshly for the setbacks that occur due to lack of care.

Depression doesn’t cover it. I haven’t felt like an actual human being for so long I’ve gotten used to being invisible. I’ve given up hope because no one cares.

Gaslitbymedicine profile image
Gaslitbymedicine in reply to Prosaic_One

It’s not only in relation to the vaccine but I am curious about those stories as well. I’m just trying to be through in my search for all data. Please share with me your thoughts and concerns

Froobydoo profile image
Froobydoo

I started waking up with numb hands and feet after the Pfizer vaccination. This progresses to pins and needles, burning, deep strangling pain and more. Ended up in A&E twice. The first time I was told I’d be admitted for neurological and immunology checks if my symptoms didn’t clear. The next time I went my legs were numb and I couldn’t walk. I was waiting for a bed when an arrogant doctor came in and asked me to take my slipper off. I did as my legs had eased off by then. I’d told them it was intermittent. Instead of any investigations I was told I had FND and sent home. The next time I rang 111. I was admitted by the doctor I spoke to. They checked my notes and as I could hobble to the toilet I was told again I had FND. No tests. When I was in the hospital the consultant I spoke to asked me who my neurologist was. I said I was about to see someone and she said I know him, I’ll give him a ring. And you can guess the rest, he decided I had FND. I pushed and pushed for more help and was eventually referred to a rheumatologist. He took me seriously and did a whole raft of blood tests. It turns out I have an autoimmune condition and autoimmune small fibre neuropathy.

Have a read of this:

dontbelievehype.co.uk/covid...

Are you a member of uk cv family?

Shadow35 profile image
Shadow35

I am, but it still not sure 100% i start having problem few hour after vaccin like allergic reaction but had asthma so they all told me it's asthma and send me back home. Was coughing like a bronchitis for 5 months and add difficulty to move, walk, breath, without any help from anyone. Have previously a reaction to a vaccin with the same ingredient and product at job with polyethylene glycol. Add to change career. It wasn't possible to test back then and today it's the same they just test for immediat reaction. The allergist ask me if i drank formol to check if i'm allergic, it's an highly toxic and poison product. Since the vaccin i can't take any medication more than one day with the ingredient. If not, i get week, cough, and have problem with my leg. Sometime i get chest pain too. And it's always stop after 24 hours after i stop the medication. The day after the vaccin, have a swollen eye, red and itchy. Since that day have a ptosis and spasm and many different symptom. Some are not in the list for fnd so i'm still wondering. I went to hospital in ambulance at the beginning after the vaccin and add big problem with my blood. Was close to an pulmonary embolism.

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