Numbness over my entire body

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My entire body suddenly went numb about 7 months ago. It happened in the span of like a day. I was so freaked out I went to the ER and they told me it was peripheral neuropathy and that it would just “go away”. I emailed my neurologist back and forth for months. I thought it was a new medication they had just put me on but they insisted that wasn’t it. I recently had an appointment with him (after seeing a nurse practitioner because he was booked) and he basically insinuated that I’m crazy. Said the ER didn’t put peripheral neuropathy in my chart. Claimed it’s because of stress but wouldn’t that be off and on? This is constant. He also said it’s not a vitamin deficiency because they checked my levels but I have access to my blood work and there are no vitamin levels in there. I feel lied to and so frustrated. Has anyone dealt with this? Does anyone know what it is? I’m at my wit’s end here.

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14 Replies

  • Posted

    Sounds like gullien barre syndrome ,I was like you I just woke up with all my limbs damaged it's constant tingling for 18 months none stop not a second without had all tests normal

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    • Posted

      I’m not having any weakness though. Just a loss of sensation. I can still function. I just have a reduced perception of touch.
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    • Posted

      I have no weakness either I'm still strong but also altered sensation to touch and just none stop tingling feels like electric toothbrush on all my limbs

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  • Posted

    What was the medication??

    Was it an anti-biotic like Cipro or Fluoroquinolone ?

     

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    • Posted

      It’s lamictal for seizures. I hounded them for months until they finally caved and lowered the dose just to shut me up but I haven’t noticed any changes so they’re probably right and it wasn’t that.
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  • Posted

    I would agree it maybe Guillian Barre syndrome. I had very little weakness but really weird sensory symptoms felt like I was walking on cushions and everything I touched felt wet!
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    • Posted

      Do you know how they test for that? I think my doctor is refusing because I have no weakness and my reflex test is normal. I have a different autoimmune disorder so it’s plausible I guess. Will this go away if it is that or is it permanent?
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    • Posted

      Marilyn have u been diagnosed with gbs I woke up with tingling feet within hours spread to both knees then into both hands within 24 hours all neuros dismiss gbs saying I'd be paralysed but 1 Dr I saw had seen a mild case and had symptoms like me ,it's nearly 19 months now and none stop tingling where it's been effected not a second without ever I've seem literature online of acute small fibre neuropathy effecting a group of ppl the same way gbs comes on but only small fibres effected I have no weakness as such as I could always still walk but reflexes are on the very brisk side had full mri numerous nerve studies emg numerous bloods all normal I'm totally fed up

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    • Posted

      I had gbs and literally I know what being numbness paralyzed is like 1 year hospital cause some dumby doctor at emergency kept saying it was all in my head like you . Saying I was depressed , axiety lol I was very sick it’s this different feeling inside your body . Till last 10 days in out emergency losing every strength I had .10 I called paramedics again this time he asked me one question I fell into comma I had the worst case . God bless I was not to live my son had the obligation to put me on life support in out for days after 10 in hospital took them that long to do spinal tab yea was gbs finally on death bed the put me on plasma asp . 1 year in hospital transferrd to the best hospital for rehab 6 months of that till I was still paralyzed my poor kids had carry me Psw doing things for me bad part is I should of had Psw all day around .Nothing would show up blood work said I had bladder infection again before this same time I had flue shot wish I never did. Have you had any shot prior to this happening or any infections? Ask them to do spinal tab I know you won’t want to but this could determine what’s wrong . I know you said you had mri , have you had a cat scan?
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    • Posted

      Hi Dawn, sorry to take so long to reply ( grandchildren visiting!)

      Yes I was diagnosed with GBS ( AMSAN variant) nearly 2 years ago, diagnoses was made on symptoms and results of nerve conduction study. I was very lucky to be treated by one of the top neurologist in the UK ( I am Scottish but live in Spain, I was on holiday visiting family when I became Ill) all my follow up has been here in Spain and has been excellent, now discharged completely from neurologist.I do still get tingling and pins and needles in hands and feet especially when I overdo things. Hope things improve for you soon x

      PS when I was diagnosed I had total absence of all reflexes which are only now returning

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    • Posted

      Standard tests are lumber puncture ( spinal tap if you are in US) and nerve conduction study ( EMG)  my reflexes where also absent which is another  pointer to GBS. They did all sorts of very specialized blood work as well
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    • Posted

      It’s been 3 years 3 months still can’t walk fast still get lots issues still numbness lower part my leg and sand paper feeling my feet toes when I walk don’t feel it when I sit doe lay down shower so on . Some one told me about I might have cidp . Now I have some really interesting arrivals I can copy past . This one women had it at 20 she’s 60 now still has many issues they say ppl that have not had plasma so on can get it back 2/5 times if you didn’t I did . There’s a lot more now there even putting lots more up on google which I never saw in 3 years . I’m waiting nerology again my dr I hope he sent it out hes doing lots mistakes . I’m sick to much this year 14 times that’s way to much thing now I know more of then my own doctor does I should been a doctor😆🙄 but if any one wants more information message me . I hope all goes well for all you . And I was paralyzed head to toe 

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  • Posted

    Hi Hun I know how it feels to be peralized I had gotten gbs ( Gillian Barrie Syndrome )hard to talk about it cause I talked about on this forum so long . You can read up on google about it . You should change doctors I’ve bren through that doctors seem to forget a lot so on . Or he planned out lied . This is an issue I mean he tells you, you have this but yet he denies that he said that , that your making that up ? Do you have conversation you said you emailed him ? Cause he could be in lots of trouble know one just gets paralyzed for know reason ,so you need to get a new referral and all documents that , that neurologist had be sent to the other. Being that said do you have any tingling? Or any other symptoms? 
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