FND orMs

[Bulldog07]

Morning , as anybody been wrongly diagnosed with FND n actually later been told it’s MS , if so what were your symptoms that got u the correct diagnoses , ive had so many different symptoms in the last few months that relate to MS , Thankyou

[mermaid-680]

Hi Am not diagnosed with MS but 9 years ago I had optic neuritis in left eye , then right later

Tests for ms were negative except for Visual evoked potentials . I already had neuro probs in my body but as it wasn’t ms at the time they felt the eyes were a separate thing and the rest was fnd the eye drs said there was an increased risk of developing ms later but at the time they treated the ON as an isolated incident .

This year I’ve had new neuro probs , changes in lower limb reflexes and currently optic neuritis in right now left eye . With nystagmus and oscillopsia and retrobulbar type optic neuritis . The eye dr asked if I have ms , just had mri scans and bloods to see if I have MOG , transverse myelitis etc current neuro isn’t convinced I have MS but looking at ms mimics ..

Awaiting nerve tests for lower limbs and eeg all urgent but no sign of appt yet for these

Have you been officially diagnosed with MS now? My neuro is looking at ms mimics presently ..I may also have a thoracic back issue and he wants to check if I have peripheral neuropathy in lower limbs as ankle reflexes are not there and Babinski is now mute on both feet , have clonus on both knees also . These changes have come on gradually since June this year .

I think there is misdiagnosis of fnd when infact it’s something organic and the rate of misdiagnosis is the same rate as organic disease . Fnd can mask organic disease also esp if drs don’t bother to investigate thoroughly ..so I think fnd is the diagnosis used if tests and reflexes are normal which I feel is wrong because at that point it’s unlikely that patients get review or repeat tests unless there is a change in baseline findings .

According to NICE guidelines people with fnd diagnosis are excluded from monitoring by a consultant or further investigations and advise is to keep these patients out of the system as much as possible ..and limit their care to Gp level ..I think this is wrong ..because people’s symptoms can change and organic issues do arise which can be missed or delayed in diagnosis ..leading to lack of treatment and access to suitable care and mediations ..

I hope you are getting the right care abd treatment now

Fnd can co exist with organic problems but it’s hard to quantify and yes misdiagnosis does happen

In my case whatever is going on is affecting my autonomic nervous system also

Be good to know a bit more about your journey and what changed for you do have an MS diagnosis .

[Bulldog07 in reply to mermaid-680]

Thankyou for your reply 👍

[210272]

I'm fairly sure there was a high profile case of someone being misdiagnosed with M.S. when, in fact, it turned out to be a 'psychiatric presentation' of M.S. (IE FN(C)D). I think whoever it was got a massive payout from the NHS due to the misdiagnosis leading to inappropriate and potentially damaging treatment.

I'd like to see similar payouts for people who have been misdiagnosed with FN(C)D (sometimes for reasons like 'you don't have dementia, so it's FN(C)D' or 'you don't have Parkinson's, so it's FN(C)D') who later turn out to have Visual Snow Syndrome, Mal de Debarquement Syndrome etc etc (p/w rare conditions are particularly vulnerable to being misdiagnosed with FN(C)D).

[Bulldog07]

Thankyou for getting back , I was diagnosed 12 months ago with FND , since then my symptoms have got worse n have a resemblance to MS , I’m waiting to see my consultant 🙄, havnt seen him for 8months n he now on holiday for 6weeks 😣, I’m trying to get answers because longer u leave ms without treatment , harder to recover , my daughter was diagnosed with fibromyalgia n after 5years they scanning for MS 🙄