FND & MS

[Gemmah87]

I was diagnosed with FND first however after brain mri showed I had several demyelination lesions and a positive lumbar puncture was told I have multiple sclerosis as well,

I had more lesions last year on a brain scan however I am always told my clinical symptoms are FND however radiological ms active

my question is how am I supposed to know what is ms and what is fnd

Its seems like no matter what as soon as you get a diagnosis of fnd everything is blamed on that even if there is evidence of something “organic” actually happening as well

I do accept I have fnd as I know it can show on a clinical examination but there needs to be a better way to find out what is ms or fnd for us as patients

It is crazy to be honest that I feel relief being told you have ms as well and some new inflammation on brain scan to almost prove it’s not all FND

I really hope there is more research done on fnd and more help for us

Plus help for us who are diagnosed with FND and other conditions like ms / epilepsy etc to help the patients learn how to cope with having different medical conditions

[Jofisher]

hi Gemma I feel for you I have fibromyalgia and FND and I haven’t got a clue what causes what anymore and to be honest the medical profession has a long way to go to answer ours and their questions

[Lady4 in reply to Jofisher]

My cousin has that, sometimes bed ridden and other times fine. Sure that was mentioned on the "David's story" on the TMS link I posted. David was been interviewed by "pain free" host (can't recall name) but he lumped FND. Fibro and a whole lot of other disorders together in one statement.

[Lady4]

Hi Gemma

I heard recently that the functional neurological disorder mimics other disorders like ms and epilepsy. However, in your case there is structural evidence that supports the ms diagnosis and that is what they should be investigating.

I don't really know how MS starts and whether demyelination lesions are a major concern. However, if you have started to get more over time, I would have thought at the very least you would get regular scans.

Have you researched MS? Let me see if I can find some basic info for you.

Hugs xx

[Gemmah87 in reply to Lady4]

From my understanding ms and fnd mimic each other and my official diagnosis is now fnd clinical features radiology ms active

Thank you for help / reply

[Lady4 in reply to Gemmah87]

mssociety.org.uk/about-ms/w...

This is where I would go, if you need information.

Maybe contact them and find out exactly what that means in laymans terms and what help you should be offered moving forward.

[210272 in reply to Gemmah87]

Hi Gemmah87,

That seems to be a very vague diagnosis (apart from the MS part) so I'd ask what 'clinical features' they are using to support the FND dx. Have they provided you with a workable treatment plan for both MS and FND? I hope so

[Gemmah87 in reply to 210272]

unfortunately not basically just got to get on with it

All my clinical features are FND only the brain scan proves I have ms as I have multiple small lesions 🙂

[AJ21FT in reply to Gemmah87]

Hi Gemma sorry to hear you have FND plus signs of Ms on the mri scan. That must be so frustrating for you to be told you have all the signs and they wont diagnose you with it, have you been started on any treatment at least? I hope you dont mind sharing your symptoms as I am going through something similar, My symptoms are tingling/numbness and weakness in my right leg and arm, loss of co ordination and balance. I was told possible MS but had a brain scan and the neurologist told me it was FND. What where the clinical signs of FND to diagnose you? Thanks

[Gemmah87 in reply to AJ21FT]

I am diagnosed perhaps reluctantly by neurologist with RRMS too,

I think maybe it’s the way my walking is I’m confused as I never know what is ms or fnd

Sorry I couldn’t help

[Lily1986]

So sorry you’re going through this. I’ve been diagnosed with FND despite brain MRI showing multiple lesions and reported evidence of demyelination.

I’ve never seen a neurologist face to face either only over telephone which is ridiculous, so haven’t had a lumbar puncture.

I agree with you they should investigate both possibilities fully before telling people they have FND.

I read somewhere they discovered they’d been over diagnosing MS and that’s when they started telling people they had FND. So basically many people can now be misdiagnosed and not investigated or treated appropriately due to their past mistakes. Ridiculous.

[Gemmah87 in reply to Lily1986]

Wow that is really scary to know

I think so many are getting told fnd as there a positive signs of it despite evidence showing reasons on say MRI that there is something else going on as well, but once they say fnd it’s nearly impossible to say we don’t have fnd it will be say ms and fnd there just needs to be help for people with fnd and help when there’s a dual diagnosis