Page 1 of 2 12 LastLast
Results 1 to 10 of 16

Thread: Clinical loss of left sided sensation and feeling scared

  1. #1
    Join Date
    Nov 2015
    Posts
    338

    Clinical loss of left sided sensation and feeling scared

    Recently I've been dealing with transient loss of sensation and pins and needles in my left nostril, eye, neck, hand and foot. It comes and goes, and seems to be caused by movement. A few weeks ago, I ended up in A&E with stroke like symptoms all down my left side. They ruled out stroke, but the consultant who saw me afterwards said I had definite problems in my left side. He said it could be MS, though the pattern didn't fit. The other possibility is that something is pressing on my spinal cord or brain stem. The whole one sided numbness didn't fit with a simple pinched nerve. He booked me in for a head and neck scan for the end of this month and I'm pretty scared.

    I have two prolapsed discs in my neck, and one could be moving against my spinal cord but they need to see more imaging. That's rather terrifying, as its common knowledge that anything damaging the cord is definitely something you do not want. Currently, if I turn my head after sitting still for a few moments, I hear a loud crack, grinding and popping in my chest and ribs. Then my hand and foot goes numb, and sometimes my face. A new doctor I saw recently said that sounded a lot like neck instability, especially as it comes and goes with movement. They also noted how hypermobile my finger joints were. I explained that every joint in my body is like that, and that they often cause intense pain.

    I'm freaking out because for the past 3-4 years I've been begging my doctors to take my hypermobility seriously as this is a huge culprit for spinal instability and disc degeneration. I have almost all the symptoms of hypermobile Ehlers Danlos syndrome, but they refused to look into it. I've turned up to the doctors with crushing pain in my left arm and leg, and the most horrific migraines for a whole year only to be told I was anxious. Even when I told them my aunt who was hypermobile ended up fully paralysed from cervical instability, they told me I probably just had a stiff shoulder...Now that it has turned to loss of sensation, they finally decide just maybe I might need help. The solutions for cervical spinal cord compression are not easy ones. Its usually risky fusion surgery with a permanent reduction in motion and your life is never the same.

    Had they just taken me seriously when this was only pain, I would have been referred to a physiotherapist who specialised in hypermobile people, and would very likely have slowed further damage to my spine. Instead I was given exercises to stretch my neck, to "loosen it up" even though it can turn like an owl, and my whole problem is that my neck is always too floppy and loose to begin with.

    Because of my hypermobility, there's a good chance any damage will "hide" on the MRI I'm getting because I will be lying down and my joints will settle. This is common knowledge among people with spinal instability caused by hypermobility, not just me guessing at things. I will need an upright MRI where I'm flexing my neck to show if something is moving out of place and pressing on my cord or brain stem. Trying to get referred for that is like winning the lotto.

    I just have this mixture of fear and anger that I can't let out. I'm trying to be really calm around my loved ones, but inside I'm falling apart. I'm scared that I could suddenly lose more function in my left side, and I'm angry it took so long for my doctors to listen.

  2. #2

    Re: Clinical loss of left sided sensation and feeling scared

    This sounds horrendous and Iím so sorry no one has replied. How are you feeling now? Still scared I can imagine but itís great you have a scan booked soon. I know you said you have doubts about the scan because youíll be lying down but you never know. Also I doubt theyíll just brush you off and say itís nothing, youíll be sent for more tests with those symptoms and family history. Have you been referred to a neurosurgeon or orthopaedics at all or just the scan so far?

    This is not the same but I currently have severe spinal stenosis in my lower back which is compressing the cauda equina (which causes severe back pain and sciatica). This scared the cr*p out of me when I received my scan results especially knowing that any bad movement could cause loss of control of my bowel or even paralysis! But just know that you are not alone and that eventually youíll get your diagnosis and then your treatment. Itís a long process. Donít you just wish you could go private and get seen straight away 😢

    Take care WorryRaptor and try not to worry. Easier said than done I know.

    WorryBug x

  3. #3
    Join Date
    Nov 2015
    Posts
    338

    Re: Clinical loss of left sided sensation and feeling scared

    Quote Originally Posted by Worrybug88 View Post
    This sounds horrendous and I’m so sorry no one has replied. How are you feeling now? Still scared I can imagine but it’s great you have a scan booked soon. I know you said you have doubts about the scan because you’ll be lying down but you never know. Also I doubt they’ll just brush you off and say it’s nothing, you’ll be sent for more tests with those symptoms and family history. Have you been referred to a neurosurgeon or orthopaedics at all or just the scan so far?

    This is not the same but I currently have severe spinal stenosis in my lower back which is compressing the cauda equina (which causes severe back pain and sciatica). This scared the cr*p out of me when I received my scan results especially knowing that any bad movement could cause loss of control of my bowel or even paralysis! But just know that you are not alone and that eventually you’ll get your diagnosis and then your treatment. It’s a long process. Don’t you just wish you could go private and get seen straight away 

    Take care WorryRaptor and try not to worry. Easier said than done I know.

    WorryBug x
    Hi WorryBug,

    Thanks so much for taking the time to reply

    I'm really sorry to hear you're going through that and I hope that your doctors have a treatment plan to bring you some relief. I've heard that pressure on those nerve bundles can cause people intense pain and numbness. Spinal issues truly are scary, especially when they get to the point of possible nerve damage or paralysis. I know what you mean about wanting to go private, just to get some answers and take quick action! Did your doctor tell you what the next step is?

    I'm still feeling pretty scared if I'm honest. My symptoms keep waxing and waning, which lends more weight to movement in my neck causing it. Simple things like turning my head too quickly or picking something up can trigger it, so I've become overly conscious of every tiny movement I make. I got a call this morning from the hospital to tell me they had moved my scan to January due to staffing issues, so that put a dent in things. Just really trying to stay calm and patient, and remind myself that I've had weird symptoms for years, so it doesn't mean I'm just going to completely fall apart all of a sudden. Easier said than done when I feel my hand, groin and foot go tingly and numb.

    I also managed to get a hold of my A&E discharge letter from when I went in with stroke like symptoms, and all of the details were completely wrong. I was described as having mild all-over weakness (though I reported entire left side paraesthesia and balance issues) and their suspected diagnosis was a tension headache. I saw three different doctors that night, all of whom wanted to keep me in for further imaging due to clear signs of left sided issues and not a single mention of a headache. In fact, the neurologist who saw me that day was adamant that I get imaging as soon as possible and that my symptoms did not match migraines, pinched nerves, or muscle tension. She said she would have me in an MRI immediately if it wasn't the weekend (apparently they aren't available during weekends, or maybe kept clear for traumas etc).

    I was so confused, and when I brought it up with the hospital, they said it was a miscommunication, and apologised. They called me in for a further consultation which lead to the doctor booking the head and neck MRI, explaining that my symptoms were indicative of neck instability or demyelination. I'm finding it very difficult to trust that this kind of mixup won't happen again, or they will consider me less urgent than I really am. I understand the NHS is under a lot of pressure at the moment though.

    I'm really worried they didn't record my real symptoms or family history. This has happened to me a lot with previous complaints about the same issue to my GP, particularly when I've mentioned hypermobility in the past. One GP told me to sweep my pain under the carpet because we all feel strange now and again, despite me coming back with the same left sided issues for an entire year, getting worse and worse. I'm not sure if I just have awful luck with doctors, as I know there are many wonderful ones out there.
    Last edited by WorryRaptor; 21-12-21 at 15:10.

  4. #4
    Join Date
    Nov 2018
    Posts
    198

    Re: Clinical loss of left sided sensation and feeling scared

    I'm sorry WorryRaptor
    I'm here for you as you are for me....
    My symptoms seem to be getting worse...my entire left side seems to hurt/burn twitch etc
    I've had these symptoms for years which seem to be getting worse and they are not leaving
    I thought it might have been symptoms of diabetes but no but still the symptoms exist with more pain etc
    I put 2 and 2 together and realized like you mine are all on the left side
    God bless us all

  5. #5
    Join Date
    Nov 2015
    Posts
    338

    Re: Clinical loss of left sided sensation and feeling scared

    Quote Originally Posted by BadCompany View Post
    I'm sorry WorryRaptor
    I'm here for you as you are for me....
    My symptoms seem to be getting worse...my entire left side seems to hurt/burn twitch etc
    I've had these symptoms for years which seem to be getting worse and they are not leaving
    I thought it might have been symptoms of diabetes but no but still the symptoms exist with more pain etc
    I put 2 and 2 together and realized like you mine are all on the left side
    God bless us all
    Thank you so much BadCompany, I really appreciate that

    I hope you find a solution for your symptoms too. Do keep us posted. I'm sending lots of supportive hugs!

    I also hope my post hasn't caused you any extra anxiety about what you're feeling and going through as I know you are experiencing similar symptoms. My issues are very likely from severe double jointedness in every single joint in my body, which I treated awfully in my youth. Lots of nasty falls from horses, climbing, high impact sports, and whiplash from a car accident in childhood.

  6. #6
    Join Date
    Nov 2015
    Posts
    338

    Re: Clinical loss of left sided sensation and feeling scared

    I was doing okay for a couple of days during Christmas where the symptoms slightly subsided. I started wondering if maybe it had all been a weird anomaly. I even started hoping maybe my body was healing something as the tingling and weakness became really faint. Then today it came back really strong. I playing a video game, and when I was leaning forward to reach for something on the coffee table, my left ring finger and thumb went numb, and then almost immediately afterwards, my left toes and foot went tingly. Then my eye and side of mouth did the same. Now my groin has the same feeling, all on the left side. It's such a dreadful sensation when it happens. It's hard to stay calm when I'm wondering if something could slip out of place and paralyse me. It doesn't help that I have a truckload of tasks around the house to get done before next week.

  7. #7
    Join Date
    Nov 2015
    Posts
    338

    Re: Clinical loss of left sided sensation and feeling scared

    Had the MRI this morning. For some reason the consultant decided that contrast wasn't needed. A bit concerned that could mean they might miss something. They said if this scan warranted another look with contrast, they'd call me back in. I hope they don't have to call me back in and that my phone stays nice and silent for a while!

    Mentally exhausted from the stress of all this. My left foot and hand went tingly and numb while in the MRI machine, so I'm hoping if anything was happening in my head/neck it would likely be caught at the time.

    Just waiting to hear back which is the worst part of this whole thing.

  8. #8
    Join Date
    Nov 2015
    Posts
    338

    Re: Clinical loss of left sided sensation and feeling scared

    Got a bit too confident and picked up some bags to throw in the bin. 20 mins later I'm tingling and muffled from head to toe with numbness in my tongue and throat too. Still nothing back from MRI so I'm hoping it means nothing super urgent turned up. That being said, my last scan that showed prolapsed discs in my neck wasn't reported to me for three weeks. Trying not to get too worked up about it all, but it's a dreadful feeling when it happens. I'm really wondering if my neck temporarily shifts out of place when I strain it.

  9. #9
    Join Date
    May 2014
    Posts
    492

    Re: Clinical loss of left sided sensation and feeling scared

    Did you find an answer WorryRaptor? Iím literally experiencing the same as you.

  10. #10
    Join Date
    Nov 2015
    Posts
    338

    Re: Clinical loss of left sided sensation and feeling scared

    Nothing concrete yet unfortunately :(

    They're guessing because my neck is hypermobile, maybe movement/misalignment presses on something temporarily but they're not entirely sure. They've been very honest with me and said that's just a guess, and that they wanted to rule out anything else big and obvious which my lying down brain and cervical spine MRI was for. As a lying down MRI wont see cervical spine instability caused by movement, I might have to look at having an upright MRI if they decide its the next best step.

    It's still coming and going on a daily basis, especially if I lift something heavy or bend a certain way.

    I'll make sure to update this thread if I do get an answer, but it's looking like that won't be very soon.

    I'm sorry to hear you're dealing with the same symptoms. They're awful! It's hard to convey to people what it feels like and that makes it all the more difficult to experience.

    Do you experience it daily, or now and again? I've heard that having it now and again could be hemiplegic migraine which causes stroke like symptoms and resolves in a few hours or a day. I was hoping mine might be due to that but since I have it on an almost daily basis, they don't think its that.

Page 1 of 2 12 LastLast

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. Left sided 'weakness'
    By Westy75 in forum Health Anxiety
    Replies: 45
    Last Post: 12-11-17, 16:22
  2. Replies: 5
    Last Post: 11-06-14, 19:05
  3. Left sided 'stitch' feeling
    By sarahann in forum IBS, IBD, Bowel, Stomach problems
    Replies: 2
    Last Post: 13-09-13, 09:13
  4. Replies: 3
    Last Post: 20-06-11, 04:52
  5. Left sided headache
    By anx mum in forum Health Anxiety
    Replies: 10
    Last Post: 24-10-09, 08:20

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •