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Thread: Clinical loss of left sided sensation and feeling scared

  1. #31
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    Re: Clinical loss of left sided sensation and feeling scared

    I went back to my GP again to see if I could get more answers, and by my GP I mean a locum one because I can never get an appointment with my usual one. I'm still completely in the dark, and pretty frustrated. II know there's something going on with me, and I'm aware it's complex but I can't stand when a GP tries to railroad me into a diagnosis that doesn't fit.

    When I described going numb in my left side, my head filling up with pressure but not pain, and dizziness, they interpreted all of that as physical pain. I insisted it wasn't painful, that it was a loss of feeling, then weakness, but they just didn't want to engage with that. Instead they continued to suggest pain management. It was only when I repeated it a third time, did they actually listen and told me to wait for the neurologist. This GP was very nice and seemed to care, but it was like talking to a wall.

    They also had a look at my neck MRI, and had yet another interpretation of it. The first specialists report said moderate stenosis in three vertebrae which would account for some of my symptoms, the second specialist said lesions in cervical scan unlikely to cause my symptoms at all, but that there was definite damage to nerve exits, and signs of narrowing, and now this doctor said I had very early signs of degeneration but nothing too concerning right now. I have no idea who I'm supposed to believe.
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  2. #32
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    Re: Clinical loss of left sided sensation and feeling scared

    Another blip. I had about 2-3 weeks of no weird left sided issues, and thought, hey maybe its gone. Yesterday changed that. I had a horrific headache at the back of my head all day, and took ibuprofen (I never take it, maybe once in a year). Within an hour, the headache got worse, and I felt dizzy and weak. There was whooshing in both ears, like pressure was building up and I got kind of shaky. Then the pain faded significantly, but suddenly, my whole left side felt weak and tingly. I felt like I was going to pass out, and I burst into tears out of nowhere. That feeling stayed for about an hour, then slowly faded to more of a mild feeling. My fiance said to calm down as I've had this before and it always goes away over a few days.

    My left eye, ear, hand and foot still feel weird and muffled today.

    I'm worried its something bleeding in my brain. My blood pressure has likely been higher from doing way more physical activity lately, and perhaps the ibuprofen tipped the scales as it thins blood and raises blood pressure further. It well known to avoid if you have any risk of bleeding, and I'm so scared I have a weak vessel in my brain somewhere. I know my MRA was clear, though they said it had a lot of movement artifact on the notes, plus "signals" they wrote off as a technical fault. That means the images may have missed a smaller aneurysm.

    I have my neuro appointment tomorrow, and I'm really scared they will laugh off my concerns. They're unlikely to order another MRA or MRI My original one was private, and they don't have access to the imaging itself, only the report. Something just feels really wrong.
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  3. #33
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    Re: Clinical loss of left sided sensation and feeling scared

    Had my appointment today.

    The neurologist is going to run a repeat MRA just to give me peace of mind but he said he'd be very surprised if anything showed up. I didn't really push for that at all, I just mentioned that Id had one to rule out family history stuff. I said that they had made a note about there being movement artifact, so he said he would arrange one with contrast.

    His opinion was that I possibly have hemiplegic migraine, though he isn't very sure he believes those are real, and leans more towards the idea of functional neurological disorder (Edit - which he is also on the fence about existing as we know it. I don't know if he meant for me, or in general, as it was difficult to understand him with masks and a fan blowing in my face. I suppose he was being cautious about making any definitive guess but I got the impression that he didn't feel there was a structural cause to this). The fact I have very intense migraines might be coincidental, or it could very well be part of the migraine process. Something is exciting my nervous system, and it's causing these symptoms. Could be hormones, could be food, could be migraine.
    Last edited by WorryRaptor; 03-08-22 at 14:29. Reason: Forgot detail
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  4. #34
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    Re: Clinical loss of left sided sensation and feeling scared

    Would you accept an FND diagnosis?

  5. #35
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    Re: Clinical loss of left sided sensation and feeling scared

    Quote Originally Posted by pulisa View Post
    Would you accept an FND diagnosis?
    I would. I just want an answer and at this point, I don't give two flying f*cks what that answer is.

    The neurologist was reluctant to give me that diagnosis even though he was leaning towards it. He told me its considered quite rare, as are hemiplegic migraines (if they even exist according to him). With FND, it usually involves one whole limb, or a face + hand, or a hand + foot etc. Mine is left face, hand, groin and foot all at the same time, comes on suddenly like a stroke, and can last minutes or days. It can follow a horrendous headache, or happen without one too. Doesn't quite fit with FND, though if it turn out to be that, then so be it. Not fully convinced as he wasn't completely of the belief that FND was much of a thing either.

    I've been letting countless people down around me due to having to cancel plans, disappoint my customers, and constantly play catch up with everything. I'd really like to know what I'm dealing with.
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  6. #36
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    Re: Clinical loss of left sided sensation and feeling scared

    So the tentative diagnosis is hemiplegic migraines. Still got to wait on further MRA, but they don't think that will reveal anything. GP mentioned something about vasculitis but that its rare and not going to test for it. My MRI likely would have shown irregularities if was cerebral vasculitis, so my joint pain, malar rash and fatigue is unlikely to be connected. They said there could be an immune issue, but nothing that has jumped out on blood tests. So I'm kind of being given the hemiplegic diagnosis even though they're on the fence about it being a real thing. Apparently the UK is slowly coming round to accepting it, and there's a possible genetic component.
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  7. #37
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    Re: Clinical loss of left sided sensation and feeling scared

    And do they explain all your symptoms? Are they offering any specific treatment? I really hope they can help with a plan now they almost have a diagnosis.

  8. #38
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    Re: Clinical loss of left sided sensation and feeling scared

    Quote Originally Posted by Scass View Post
    And do they explain all your symptoms? Are they offering any specific treatment? I really hope they can help with a plan now they almost have a diagnosis.
    They seem to explain many of them, though the frequency is strange as I spent months with on and off numbness in my left side. The neuro said that this can sometimes happen with some migraines, and then subsequent episodes could be shorter. It's the closest diagnosis that fits, and I suppose since they're not widely understood, mine might be some kind of variant of "normal". As I've had migraines since childhood, it may be that they have changed to hemiplegic rather than the classic pattern I was used to. My GP is still going to check for more autoimmune stuff, and hopefully run an ANA blood test, but I have to make another appointment to follow up with that.

    As for treatment, they told me that some migraine medications can make hemiplegic migraines worse, so to start, try anti-inflammatories when I feel one coming on. They suggested that I keep a food diary to see if they are in fact set off by some kind of immune response as I did see an improvement in other symptoms like joint pain, and tachycardia, when I went on a low histamine, low inflammation type of diet. They were quite honest with me in that they didn't have an exact treatment as hemiplegic migraines are quite uncommon, and they're not sure what is triggering mine or if I 100% have them, though its looking that way. I think a huge part of being able to manage this, is having an answer, or at least a potential one.
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  9. #39
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    Re: Clinical loss of left sided sensation and feeling scared

    A little update here. Neuro sent me for another MRA (my previous one was private and he was unable to get the images) as apparently my theory about a chronic leak wasn't as silly as I thought (though maybe he just wanted to show me he was listening to my concerns). I had the MRA done today. It only took 4 minutes, even though they said 10. They took one sequence, then pulled me out, and said I was done. After the scan, they asked if I had an appointment booked to discuss my results, and I said no, that the neuro would call me in a few months. They said "you'll get your results sooner than that". I asked if they knew if anything was bad on there, and they said they couldn't say, as it was up to the neuro to compare with older scans to see if anything had progressed. I thought to myself "but this is my first MRA ever with the NHS, they don't have any images to compare with, so that must mean they saw something, like a small aneurysm etc"

    I'm trying not to worry, but the abruptness of the scan as if it was cut short, and the conversation afterward, made me uneasy. I'm trying not to read into anything there, but I worried that they saw something and thought I was a patient with an already recognised issue getting a follow up. At one point, one of them even called it an MRE, which is a completely different scan to an MRA.

    I'm hoping it was just my migraine addled brain making the atmosphere more tense than it really was, and that they were just saying things that didn't mean anything. I HATE the days after a scan where you're desperately hoping that phone doesn't ring.

    I've also randomly developed an allergy to ibuprofen. It's really weird as it started with throat tightness the first time, tingling and throat the next, and the third time I took it my whole left side went weak like a stroke, and my throat felt like it was closing. My friend who was a pharmacist said that it was the beginning of an anaphylactic response, and to never take it again as next time my throat could close. GP has now put in on my file. First two antibiotics, now ibuprofen, not sure why my system is reacting so much to random things. I'd very much like it to stop.

    I'm a bit wound up as a close family member had another brain bleed recently. They survived it, but they has lost massive chunks of their memory, and they no longer know who I am. It's all a bit too much.
    Last edited by WorryRaptor; 11-10-22 at 11:54.
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  10. #40
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    Re: Clinical loss of left sided sensation and feeling scared

    Maybe you are reading too much into their routine comments?

    To them you are just another patient on the NHS conveyor belt. They haven't read up on your history. Their job is to do the scan and send you on your way. Your consultant will look at the result and offer you a follow up appointment..hopefully before 4 months.

    I'm sure the scan would not have been cut short if what they saw was so bad that they couldn't proceed any further? They would have taken as many images as possible to view whatever it was from all angles in order to give your consultant as much information as possible?

    I'm sorry to hear about your relative's brain bleed..and not being recognised must be incredibly distressing. It must be completely overwhelming for you and you could have done without another scan/dreading the phonecall episode..Are you able to find some distraction this afternoon?

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