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5 months of sensory symptoms: Prickling, wet, cold/hot and twitching

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apatel84
apatel84

Has anyone else experienced these types of thing?

I started from February 11th, 2020. My left foot went kinda numb/altered sensation and then the whole host of sensory symptoms started.

The left resolved itself, but I the two mains symptoms I get now are prickling and visible spasms/twitching throughout the body. Symptoms generally are different everyday, ranging from very mild to a day of twitching (no prickling) or a day of prickling (no twitching).

There have been points over the last 5 months where I thought it would be resolved but it always seems to reappears. My Neuro is fairly dismissive and doesn't think it's nerve damage or anything like that, and thinks it may have been as a result of my pneumonia or antibiotics (not Fluxo) back in January.

I've tried everything really: altering diet, taking magnesium, Amitriptyline (which did nothing), drinking loads of water, etc. but it seems like I am stuck with it.

Neuro said the fasciculations I am getting are benign and nothing to worry about as he has tested me out and all bloods, MRI, NCS/EMG were fine, aside from slightly raised T4 and excessive B12 (due to supplementation probably). He didn't want to label what I have (probably because he is unsure) but implied a lot of people don't always feel normal and it's essentially nothing sinister.

The annoying thing is I was normal and healthy before all this, and whatever I have now is really affecting the quality of life as the days where it is worse, it really gets me down.

I did think this would eventually all disappear but 5 months on, it's still around which makes me think it's permanent.

ARGH! Any thoughts or similar stories? The only saving grace here is none if it is painful (touch wood) and more irritating. The twitching days I don't mind, but it's the prickling and uncomfortableness of that which really bothers me.

I was thinking of getting a second opinion but not sure it will have any merit.

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2 Replies

  • theworriertx
    theworriertx apatel84

    Posted

    look into benign fasiculation syndrome. If your EMG was clean you are probably dealing with that. It can take a while to go away...your stress and anxiety also adds to it

    • apatel84
      apatel84 theworriertx

      Edited

      I did look into that but I just think the other sensory symptoms aren't typical of it.

      Having looked into this further, I am 99.9% sure is Functional Neurological Disorder (https://rarediseases.org/rare-diseases/fnd/)

      This basically came on after a bad infection (which looking bad could have been COVID) and everything it says resonates perfectly, ie.

      A Functional Neurological Disorder (FND) can encompass a diverse range of symptoms including limb weakness, paralysis, seizures, walking difficulties, spasms, twitching and more.

      Whilst the symptoms may appear similar to those seen in neurological diseases such as Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as debilitating, they are not caused by structural disease of the nervous system. Instead, they are caused by a problem with the “functioning” of the nervous system.

      The structure of the body is fine, but there is a problem with how the nervous system is functioning, and how the brain fails to send and receive messages correctly. This impacts on how the body responds to different tasks such as movement control.

      My neuro had initially said sometimes the nervous system can stuck in a 'bad loop' and it needs to be re-mapped essentially, so the above seems to fit.

      Unfortunately, there doesn't seem to be a cure or anything aside from CBT. I guess I'll just need to live with it for now. Today is a good day, as was yesterday, but the day before was hellish.

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