Metallic numb tongue

    • Anonymous
      February 2, 2007 at 4:24 pm

      This could be anything ….. but I am curious if anyone else has this …

      Everyday for the past week or so, I have been getting that metallic numb tongue feeling I vaguely remember when I was first diagnosed with GBS in ’85. Its just really irritating, and obviously doesnt feel good, but I’m not worried as it isnt anything like the fatigue and the pain in my hands and feet sometimes.
      For those of you with [B]’Post GBS'[/B], do you sometimes have the same feeling? ๐Ÿ˜ฎ

    • Anonymous
      February 2, 2007 at 5:55 pm

      [SIZE=2]Hello Ali,
      I know what feeling your speaking about however I had it during the time I had GBS and then it went away. I have not had it since GBS. Sorry I could not have been of more help, you have been so helpful for me!!!!!!!!!

      Thanks Tammie ๐Ÿ˜ฎ

    • Anonymous
      February 2, 2007 at 6:08 pm


      I’ve had a lot of symptoms come back when I’ve overdone it. For me, it’s my feet not picking up all the way, bad grip/limb strength and sometimes aspirating saliva into my lungs. But no tongue. Still, the fun of syndromes is it’s different for each person! Have you been working really hard lately? Asking a lot of yourself emotionally/physically? If so, it’ll probably go away with some rest. If not, maybe think about making a doc appt and risking looking like a hypochondriac (but a safe one, at least!).

    • February 2, 2007 at 8:31 pm

      I have neuropathy on the outside of my thighs, some spots on my lips and on the edge of my tongue. I have had this since the onset of GBS and I’ve just gotten use to it. I do not remember if there was a metallic taste as I was so drugged when I was in the ICU that everything is a fog! ๐Ÿ˜ฎ

    • Anonymous
      February 2, 2007 at 9:13 pm

      hi ali,

      not the tongue thing that you have recently been experiencing, but over the years my residuals do change. for example, these last few weeks, if i over work my hands, they swell, pain me, & get funny looking bubbles on them. if i rest them for a few days it goes away. i’m suggesting you rest up some & see if it helps. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 3, 2007 at 7:03 am

      Ali, yes, that’s exactly what I have been experiencing the last few days! And I am really, really tired so it most likely is the same thing as these numb spots I have on other parts of my body because of fatigue. I know you are going through some tough times, so please be good to yourself. So, if you are not done redecorating your bathroom, just take a break, or, better yet, leave it to your lovely and loving husband and daughter:).

    • Anonymous
      February 3, 2007 at 12:24 pm

      yeap got something like that too, ali. i find i get the metalic taste if i touch something like glue, oils, cleaners, or sometimes pots and pans, with my hands. it kinda zaps me and i can’t stand it. my tongue has numb spots on it most of the time anyways, but when i have that metal taste on top of it, it drives me nuts. take care ali and make sure you get rest in between your play times!:)

    • Anonymous
      February 3, 2007 at 9:48 pm


      I think its so strange that we are both going through a stressful period, and this tongue thing pops up. Amazing thing is that since ’85, I have had two huge spots on my upper, outer legs that have been numb, that is until about a year ago…. now they seem to have diminished to a certain extent, but all the other residuals seem to have become more prominent. Aaaaah well, such is life ๐Ÿ˜‰

      P.S. I think we both should go for a vacation on a tropical island, that should get rid of the stress a little ….

    • Anonymous
      February 3, 2007 at 9:50 pm


      That is very interesting. I am definitely going to see if things like that effect me. I have been working with paint, caulking etc, for the last few weeks, I wonder if that could be a contributor :confused: . Thanks for the heads up.

    • Anonymous
      February 4, 2007 at 8:33 am

      You don’t think the numb tongue is from talking to much on the phone last week?:p

      A vacation on a tropical island sounds great! Anyone else who wants to come?:D

    • Anonymous
      February 4, 2007 at 9:43 am

      Ali, I’m glad you brought this up! Everytime Ben gets sick, he says he has that “weird taste” that he had when he was ventilated. He’s asleep now, but as soon as he wakes up, I’m going to ask if the taste is metallic. Another bizarre thing he does is wake up in the middle of the night with a really dry mouth, needing water. I can understand something like that every once in a while, but for Ben it’s every night since GBS.


    • Anonymous
      February 4, 2007 at 10:12 am

      Hmmmmm Eva????? Could explain why we both have it :p .

      Shan, I think metallic is the best way to explain it, its realy difficult to describe, but I am curious about his answer.

    • Anonymous
      February 4, 2007 at 1:29 pm

      i’m up for a tropical getaway also! not that i’m complaining about the little bit of snow we finally have, but i can do without these subzero temps!:eek:

      shan give sleeping beauty my best and give him a BIG HUG for his helliversary!
      i have to have a glass of water next to me on the nightstand every night-i wake up and slurp all the time, sometimes 2 glasses a night. i hate getting up in the middle of the night to refill-so i’m looking for a huge mug for night time use. i also find using a straw makes it easier and i stay dryer!:D

    • Anonymous
      February 5, 2007 at 11:21 am

      Ali, Ben wasn’t much help. He says it’s not a metallic taste that he has, and he couldn’t really describe the taste he gets. I think it’s more mucousy than anything, but he didn’t really agree with that description either. Maybe he’ll come up with a better description next time he gets it.

      Cher, Ben has to use straws all the time since his mouth is still patially paralyzed. I feel so bad for him. He’s been complaining a lot lately about his remaining paralysis. I asked him the other day why he never complained about it in two years, and he said he thought it would go away. Now that it looks like he’s going to have it forever, it’s really starting to bother him, especially when we go out to eat, and food falls out of his mouth.


    • Anonymous
      February 5, 2007 at 11:27 am

      yep. was diagnosed in 2001. i’ve had the numb tounge, gums, throat, lips ever since. i don’t have the metallic taste thingy tho. kinda got used to the numbness and not being able to taste food properly ever since. of course that hasn’t affected my eating. :p hope this helps a little.
      luv ya,

    • Anonymous
      February 5, 2007 at 12:54 pm

      Hi Ali,

      I get an odd taste in my mouth almost every afternoon. That tells me it is time to take a xanax as I am apparently gritting my teeth. So I would call this a dental taste.

      If you are gritting your teeth and have fillings – this might be the answer!

    • Anonymous
      February 5, 2007 at 5:28 pm


      Tell Ben not to give up on getting better. I’m now 3 years post GBS and still finding gradual improvements. It does get frustrating, because the improvements used to come in big leaps at first, but now they are smaller and farther apart. Two years only [U]seems[/U] like forever.

      Best wishes to you both,


    • Anonymous
      February 7, 2007 at 12:40 pm

      I’ve been having the exact same issue over the past week with the metallic taste for the first time post-GBS. Bit disconcerting since that was one of the first symptoms I had when this all came up initially. It’s not as strong as the first time and seems to come and go a bit. Improved somewhat over the past few days but not gone. Also feeling like I’m dragging my bad leg a bit and having some extra tightness in my face (the last two things that have been healing). Been trying to attribute it to fatigue (rehabbing pretty hard– more like training again I guess given the jogging and biking) but I’ll probably pay a visit to the neurologist for some extra piece of mind. Was a recent enough experience here that I have to admit some flashbacks to last time. Think I’ve been checking the mirror about 10 times/day just to be sure that the face is still working.

      Hope that metallic feeling disappears quickly for you. ๐Ÿ™‚