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Functional Neurological Disorder - not ms sorry

I’ve recently been diagnosed with FND after having sensory symptoms for 7 months which evolved suddenly into right sided

weakness, total numbness of my back and right arm and numb patches on my hip, face and feet. Also I have sore legs when I

walk especially the right leg and I get a bit unbalanced in the dark.

I know this isn’t about MS but I know a few people on here share the same diagnosis, if you could share your experience with

me that would be great :slight_smile: and any tips you may have x

physiotherapy can help with the weakness.

hydrotherapy is excellent because you work against the water!

what feels like messing about in a paddling pool feels like a massive work out in a gym the day after.

an occupational therapist may be able to help with the unbalanced feeling in the dark.

i bought a tiny torch from a pound shop which is no bigger than my thumb but is very bright.

hope you find a way through

carole x

Thank you Carole! I’ll try all of this. X

I’m utterly confused by you. How did you manage to turn your appointment with your neurologist on Friday morning, after which you still seemed confused, into an FND diagnosis by yesterday afternoon? Or had you already been told it was likely that you had FND? In which case, how/why did you insist that you probably had PPMS? Or are you self diagnosing in the absence of anything official? Don’t get me wrong, it seems that there are some very real symptoms that you’re experiencing. And looking at FND, it’s as likely a diagnosis as anything else. I assume you are continuing to see an NHS neurologist? In which case you might get some useful help. Meanwhile, have a look at Symptoms - FND Hope International although I suspect you already have. I hope you are at some point able to stop worrying so badly. And have a more relaxed Christmas. At the very least, over the last few weeks, you’ve learned that you don’t have MND, and you don’t have MS, progressive or otherwise. Sue

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My neuro sent a letter to my GP with FND in it. However I want a T spine MRI to be absolutely certain because some of my symptoms just do not fit with FND. I also never suspected MND in the first place. I panicked about my MRI report but I was wrong

I had never heard of FND but, as you say, a number of people on here have had that dx and here is a website that seems to get recommended a lot (maybe you have found it already?)

I had a look myself a while back and learned a lot - most particularly it is really good at explaining that FND is a thing, not just a dx you get when they can’t find anything else specific the matter with you. If I had had an FND dx, I think I would have found it helpful and reassuring.

Alison

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Thank you Alison. I’m doing my best to push past this x

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Hi Worried, I’m also not diagnosed but have kind of been in the same situation as you. I have ‘old’ unchanged brain lesions but weird symptoms in back, neck, shoulders, and walking can be tricky. Also twitching etc. A few months ago, after an unchanged head MRI the neuro unofficially said she thought I had ‘functional symptoms’ that had no organicity. My physiotherapist told me to insist on whole spine MRI as she was certain my symptoms have an organic, neurological cause, and this showed a previously undiscovered C spine lesion (possibly two). Because of this I was referred for VEP (normal) and LP (letter says abnormal, but I also don’t really understand implications of that). All other neuro tests have been normal, and I’m now waiting for an appointment with a specialist to tell me that I have ms, something more rare, or there’s been a mistake with interpreting the results. If you are sure in your heart that you have actual symptoms with an organic cause then I would beg/plead etc for the whole spine MRI. If that shows nothing then it might be easier to accept a FND diagnosis. Good luck!

Thank you! My dad is actually pushing for a full spine MRI now. I’m lucky that my stepmum actually works with my neurologist so she has been able to tell him how much distress this is causing me. I’m almost certain something will be found on my next MRI. I just need answers!

I hope your diagnosis is something treatable x

Not knowing is awful! My mum was diagnosed with myasthenia gravis some years ago, and she says not knowing is worse than knowing. I think I agree… I thought I was just going crazy and neuro sort of agreed (I know functional symptoms are a thing, but I thought it was just another word for stress/hypochondria etc. That was just my thoughts at the time, with the frustration of not being ‘believed’). I was ‘lucky’ in that the whole spine mri showed something (I was hoping for a trapped nerve), which in turn led to the LP which showed something else. Now I’m sort of thinking the ‘functional symptoms’ were preferable, but I don’t get to choose! Best wishes for the future, hope your family can give you some support.

REJOICE, REJOICE! You’ve managed to discover over the space of a few days including the Christmas holiday that YOU DO NOT HAVE MND or ANY type of Multiple Sclerosis - even after ALL that worrying! Very happy results, yippee.

Of course you need answers but are you asking the right questions? Who on earth would suggest a full spine MRI ? Is your step mother pushing your dad to push the neurologist and radiologists for near fatal consequences. If so, no wonder you’re worried!

I don’t doubt for a second that there is something wrong, because something isn’t right. At least it’s NOT what you originally or secondly self diagnosed. I wish you a good nights sleep

I never ever thought that I had MND, why do people keep saying this?

I would argue that MS has not been ruled out. There are plenty of people with a clear brain MRI who go on to get diagnosed with MS.

I really don’t know what makes everyone so certain that I don’t have MS, is it my age? I’ve seen plenty of people on this website with similar symptoms receiving suppprt and advice but I feel as though I’m just being laughed at

It is horrible not knowing. I’m just so angry that I’m only 22 and having to deal with this, I would love to believe that I’m having functional symptoms but most people experience them on the left side of their body and they don’t normally have full body numbness either :frowning: I suppose I just have to get on with it x

Worried22, I have to say, I did sense a bit of antipathy in one of the replies above. You have my every sympathy and I haven’t dad anywhere that you are concerned about mnd. More so, if I was in your position I would be wanting a spine MRI too. In fact I am in your position, just further along, after a clear MRI, last year I was told in no uncertain terms that ms is not on the cards. I don’t agree and have had a spine MRI and lumbar done recently. Given the number of people on here that are critical of neurologists and highlight how they don’t listen and make mistakes, I don’t think it’s unreasonable to want a spine MRI. I am on your side!!!

Dad = Read

Thank you so much! I think I have every right to be concerned. I’m glad you didn’t get a diagnosis, but keep pushing for answers x