Left sided sensory symptoms - hoping to feel less alone! Very depressed!

Hi everyone - so I'll try to keep this short. Basically after a very bad migraine with aura back in August 2012, I have experienced bouts of weird feelings on the left side of my body. These feelings can wax and wane during the day, and can stick around for months then go away and I'll feel okay again. They tend to get a lot worse when I focus on them, but sometimes no matter what I try just stick around. They're here from waking to sleep sometimes too.

So I experience a kind of VERY mild tingling/burning/numbness on the left side of my face (more tingling around the left side of my mouth). My ear sometimes feels blocked and numb and my neck tingles too. I can still feel my face so it's not completely numb and it's not the kind of pins and needles you get when your hand falls asleep - it's more of a slight burning sensation. I get this in my left hand occasionally and always my left foot.

My left eye feels strange like my body is split in two and my vision is seperate from each eye (sounds crazy!!) and I have a general feeling of tiredness on that side. (Not sure if it's because I'm right handed).

I get terrible visual snow too.

I suffer from REALLY bad health anxiety after losing my mum back in 2010. So naturally I worry about MS, etc. I got an MRI, a nuerologist consultation and seen loads of Dr's and they can't find any explanation. The most they've offered is its anxiety or 'just me'. The strength tests and reflex tests are all normal and MRI came back completely clean too.

So my question is, does anyone else experience this? How long do your episodes last? What helps get rid of them for good?

Many thanks from a scared desperate girl :)

11 Replies

  • Hi!,

    I'm so glad you've come on here and explained your symptoms just like mine! I have exactly the same and more but almost always left sided! Like you I have had mri and neurology appointments seen countless doctors and still no real answers. I have been suffering since 2014 and have had it every day without fail from morning till night.

    Hopefully you will find this lots of helpful information on here and lots of friendly helpful people who understand.

    Keep in touch

    Best wishes

    Louise x

  • Hi thanks for your reply!! It's awful and I'm sorry your experiencing the same things. Do you ever feel confused and a bit mentally... lost at the same time as them? Do you suffer from migraines? What other things do you experience? I'm getting it SO bad just now its so awful! :(

  • I'm very sorry to hear about your loss losing your mum, it must have been devastating for you no wonder you worry about your health. I have all of the symptoms you describe plus I also suffer from terrible lightheadedness and perminant off balance feeling, I also have problems when I change position e.g standing after sitting or crouching as this makes me lightheaded and chest heaviness and when I walk up any stairs or incline I get breathless. I get a strange electric shock type feeling that runs all down my left side from head to toe occasionally and muscle tightness in my neck and ribs especially left side. I haven't found anything that gets rid of it yet! X

  • It'd be great if we kept in touch and emailed :) I'm Heatherlancaster@hotmail.co.uk - I find the symptoms so scary and really difficult to believe it's nothing scary such as MS :( I try to keep I'm mind I'm sure the pins&sneed led would be a lot worse if it was MS but most of the time it's really bad feels like burning on my arm and face :( I feel it's ruining my life

  • Hi

    Thank you for your email address,

    I will message you tonight as we are just taking the children out for the day. I will speak to you later.

    Take care

    Louise x

  • I'm a left sided person too! Apparently it means that the right side of our brains are affected, which conversely manifests symptoms on the left. Go figure?

    I can absolutely believe that you are experiencing such things, but there is nothing wrong with you, per se, and please don't believe that for even a second, the way it was explained to me is that the hardware of my brain and body is fine, but there's a problem with the software, and in my case, it's to do with a high level of stress of emotion, much like yourself xx

    The brain is such a mystery that it protects itself in really intriguing ways, everything you have been through is being processed and manifesting through your nervous system - and unfortunately, there is no cure as such, but there are ways to manage the symptoms and cope with them, but quite often it involves just riding the episode out. But there is always the hope that things will run their course and settle over time.

    Once I found the right support and care team, I realised that all those times I was made to feel ridiculous or self conscious by the weird & scary symptoms (nobody seemed to understand or be interested in) was down to their ignorance as a medical professional.

    You are your greatest advocate and unfortunately, unless you have a team specialising in FND, then you will find yourself repeatedly educating consultants, nurses etc, because they won't have a clue. Be prepared for that uphill struggle.

    So I now take an "It is what it is" approach, live day to day without worrying what the day will bring, and try my very best to take advantage of the 'good days' whilst I just ride out the bad as best I can.

    But know that you are not alone and it isn't 'just you' - don't ever let anyone belittle your experiences and advocate yourself.

    God bless and best wishes xx

  • Thank you SO much for your reply - what things help you get rid of the symptoms? And what kind of things do you feel? Do you find it hard to believe it's something benign? Also did you manage to get a specialist in FND? I freak out more because my symptoms come and go like MS, and my symptoms got better when I was pregnant, like MS does. But I've had them for 4 years now since a migraine with aura. They came back this time 3 weeks after my son was born. They're better in the morning and get worse during the day. I just wish I could know for sure its FND. Nuerologist said its anxiety and dr said so too. MRI came back normal. Thank you so much for your help it really is awesome.

  • Gosh, the weird & wonderful symptoms of FND... Hmmmm:

    I get hemiplegic migraines, so migraines that mirror having a stroke, they last a day to a few weeks at a time, and are the hardest issue to deal with - that is the cause of my first hospital admission, and at first they thought it was an orthopaedic issue, then psychological issue, then eventually neurological, all of my MRI's & CAT scans are clear as they often went back to potentially being MS, so I've been tested for the lesions a lot, and cried many times worrying.

    Although aside from that, all of a sudden I won't be able to talk, can't comprehend words in front of me, or understand what people are saying. Nothing to be done except to amuse myself with the incoherent texts I've tried to send, once comprehension has returned.

    I have random knee buckling (which I've been told is really funny to watch, as I tend to be quite graceful to the floor :-/ )

    Um, I go into urinary retention, because ya know, why wouldn't it affect your ability to pee? Hahaha! I often end up catheterised until the feeling comes back. Again. It's a nervous system thing. What ya going to do?

    I have random muscle spasms where I can launch things randomly across the room, but conversely have days where I can't grip anything, for all the will in the world.

    My memory is appalling... Although the strangest things are looking at my own hands & face & thinking that although I know they are mine - they seem to belong to a stranger.

    Pins & needles though out my face and entire body. Pain on the left.

    Feet that feel like they are walking on broken glass, parts of me feeling like it's under water, black outs, going faint, vertigo.

    I laugh at the funny feelings & lie of the sofa upside down with my feet up if I'm faint. I barely register the pins & needles now though, I am so used to them. Unless they are suddenly in my tongue, or on one elbow or something, ya know, some place a bit new, I really don't think about them all that much. Mindful meditation helps you to acknowledge and move on from sensations, def something to look into if they are particularly bothersome or intrusive.

    I have permanent visual snow, so the world to me is pixelated like a bad tv signal and tunnel vision, with occasional holes in my vision, and I get tinnitus. I deal with these things by thinking that I get to see the world at a different frequency than the majority, and enjoy looking at the swirls and auras around people, or hearing sounds of the ether. You know, anything to make it become acceptable.

    I take a cocktail of meds, meditate, pray the rosary, gave up meat and dairy, have vitamin d supplements and take magnesium and protein drinks.

    I don't drink (I can't imagine it's an issue for many, I just generally suck at it & am on way too many chemicals as it is) and I don't smoke.

    I try to reset myself in nature as often as possible to balance my energies & feel refreshed.

    I dunno? It's a mindset that's taken me over 5 years to develop.

    I am an outpatient with a Neuro service which specialises in FND and have a physio, occupational therapist, consultant neurologist, and neuropsychologist.

    It took me years of being dismissed, belittled and ignored & an eventual move across the country to find the right care team.

    They basically say that there is no point worrying about tomorrow, but just live day to day. We work on managing life with the symptoms we have, and explore how best to prepare for the 'bad days' and minimise their negative effects.

    The events that caused my FND are very much in the past, but I have surpassed my stress limit in life, and now the smallest thing can set it off as well as the spontaneous episodes.

    So I revamped my lifestyle & removed the people and experiences that were detrimental to my zen.

    I find attending mass has been a life saver, but that's something people can only discover independently and not something I would suggest anyone be instructed to look for, unless guided that way internally.

    This FND dictated world could be the rest of my life, or it might all ease over time. Who knows? It is what it is.

    I find being philosophical, honest and communicative to be the best ways of dealing with it. Living in your own head and trying to analyse why you're 'ill' especially when professionals who should help you seem clueless, will get you nowhere.

    There is an amazing network of support on here, I've read loads, but barely commented until the other day.

    You will never be judged, but will always be understood. It's the ignorant masses that need educating on this relatively silent and controlling illness we are experiencing.

    Oh and migraines just suck. Regardless of the type. They are horrible. And unless someone has experienced even one migraine, then they have no idea how debilitating they can be. So don't be afraid to remind people that it isn't just a headache! xx

  • VeryBerry1

    Your reply makes do much sense, I can relate to all the symptoms you experience and I find how you deal with them amazing. You seem such a lovely strong person who looks things in such a positive way to help you get through this debilitating illness. You are an inspiration to others.

    You are very lucky to have found a good support team of doctors consultants etc.

    I wish you all the very best in your recovery

    Louise xx

  • You too lovely.

    God bless xxx

  • What an amazing collection of coping strategies! Thanx so much! Im Still on the wa iting list for that specialist neuro team you talked about but im so glad you describe your experience with them. I guess that shatters my hope for recovery but i'll just have to get used to it! I love your attitude! Thanx

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