The Tongue

    • Anonymous
      August 1, 2007 at 2:07 pm

      Hey Everyone

      I have a question for you all…has anyone experienced their tongue going
      numb? I have no sense of taste right now and have noticed this before
      when I was getting worse.

      Rsearching the web, apparently there is a nerve that runs between our ears
      that supplies the nerve endings to the taste buds. It seems obvious that
      this lovely disease will go anywhere it wants.

      Luck has it that I get my IVIG tomorrow.

      Miami Girl

    • Anonymous
      August 1, 2007 at 2:47 pm

      Hi, Miami.

      Pretty much everything below my forehead is either numb or tingling. My lips and tongue are affected, as are both the inside and outside of my cheeks. (My dentist commented last time I saw her that it looked as if I had bitten my cheeks more than once. I only know I have when I see blood.)

      What I really hate is the tingling sensation that the nerves in my ear canals bring–especially unnerving after reading about the child who had a funny feeling in his ear and it was found that a couple of spiders had taken up residence!

      Keep fighting.


    • Anonymous
      August 1, 2007 at 2:48 pm

      Oh yes, I think I mentioned in another post that I don’t have a sense of taste on one side of my tongue and for awhile there it felt like my tongue had been shot with novacaine. That has improved but I still have very little feeling in my tongue, teeth, gums and the inside of my mouth. Luckily it’s only on one side so I don’t bite my tongue or cheek often.

      I suspect that the trigeminal nerve (I think that is the one you are talking about) is damaged in different parts for different people. For me it seemed to be farther back out towards the root as most of the right side of my face was droopy and numb. As things improved the numbness went away in the exact opposite progression – first my forehead got feeling, then my chin, my nose, my tongue and finally my cheekbone and eye though they still give me trouble.

      And as I said it’s a positive I can’t taste that well because I don’t cook that well but my sense of smell must be off too because my husband had to really complain about the fish tanks smelling – I couldn’t smell a thing and they [U]looked [/U]fine. 😉

    • Anonymous
      August 1, 2007 at 2:55 pm

      Julie and Deb

      It’s just temporary, but when I eat anything, it has no taste at all. Julie
      your sense of smell is part of the problem to taste…both are affected.

      Whew!!!! Change the water in the fish tank, I can remember that smell from
      my own tank…lol

      Miami Girl

    • Anonymous
      August 3, 2007 at 9:15 pm

      Hey everyone..I too experienced the paralysis in my face accompanied with the numb tongue…I couldnt taste anything…I also lost use of my arms and legs….but after 4 months of different treatments I found that 2 rounds of Plasmapheresis fixed all of that I now have 90% of my face back along with my taste…food has never been so good….I am now walking on my own..(only short distances)…..I didnt think I would ever get any of this back, but you just got to keep trying different treatments…the right one is out there..

    • Anonymous
      August 3, 2007 at 9:31 pm


      I would never do PP. I’m on IVIG, it works…but I don’t have any facial
      problems, just loss of taste.

      Miami Girl

    • Anonymous
      August 3, 2007 at 9:46 pm

      I did have some numbness in my tongue. It was relatively short lived maybe a day or so. I am glad IVIG works for you, it did not do much for me that is why i did the pp.

    • Anonymous
      August 3, 2007 at 9:52 pm


      I know PP works for some people, but to me it seems extreme…I just can’t
      fathom doing that to my body…it’s just like dialysis.

      I’m glad it worked for you…I’m just not that sold on it for me.

      Miami Girl

    • Anonymous
      August 4, 2007 at 12:53 am

      At times I get almost a metallic taste on my tongue, but its numb at the same time :confused:

      MG – Plasmapharesis worked wonders for me, its not as scary as you think

    • Anonymous
      August 4, 2007 at 7:24 am

      I too had a numb tongue and everything tasted metallic as well. I lost my appetite for almost 4 weeks. A sip of soup and thats all my stomach could handle. After about the 3rd week of numbness in the tongue it started to fade and I got my full appetite back!

    • August 4, 2007 at 7:35 am

      I haven’t had problems with my tongue {yet?} but my right eye is droopy and I have problems swallowing, mostly liquids. At first I thought my old ulcer was acting up but my doc told me it was a nerve thing. If it’s food you have problems with chances are an ulcer, if it’s mostly liquids chances are it’s to do with your nerves. Pretty strange. Doesn’t bother me except when it’s a mouth full of $4 coffee I have to spit out and I’m sure it’s not real attractive, lol. Rates right up there with crashing and burning in public.

    • Anonymous
      August 5, 2007 at 12:40 am

      The $4 dollar coffee thing was funny!! Haven’t had to do that one! I have, however, found several new ways to wipe out gracefully! I can usually pull it off too, unless my kids are with me and bust out laughing! Gotta’ have a sense of humor if nothing else.

    • Anonymous
      August 5, 2007 at 5:10 am

      Hi all
      Most of my face has been affected by CIDP. I do have the numb/tingling tongue sometimes – which I also get on my skin and my taste especially for sour and salty foods has really diminished. What I hate the worst though, is the neuralgia type pain that seems to follow the path of my trigeminal nerve – yuk! I also have a constant temor in my jaw, which I was told was from weakness of the nerves. I’ve had all of this stuff ever since my first attack years ago – it’s never gone. At least I can eat lemons now – they are not sour anymore:)
      Kind regards

    • Anonymous
      August 5, 2007 at 9:09 am

      Ali is right, it isnt as bad as it sounds….but I rather not do it anymore either just for the fact it is so time consuming….Im trying to keep my job, and I am doing my best to get back to work right now…I got a family to support, my wife is begging me to quit my job but I am just not ready yet…

      Anyways, I am giving IVIG another try….its been 2 1/2 weeks since my last PP and I can feel it wearing off already…my doctor got me set up to do ivig at home for this weekend and I will be getting my second round today. I am excited to see if my body has adjusted or changed to the effects of IVIG since I last tried it in April. I didnt even know that ivig treatment at home was even an option, so kudos to my doc for getting it set up…Its worth another try in my opinion if it keeps me home with my family…



    • Anonymous
      August 5, 2007 at 1:42 pm


      All the best for the IVIg! Please post and tell us how things went and how you feel.

    • Anonymous
      August 5, 2007 at 3:35 pm


      I woke up this morning, drank a glass of orange juice… taste is back,
      Last Thursday, I had an IVIG, so it took 3 days to get it back.

      Now, I can assume that when I start to lose it again, I’m getting weaker,
      so that can also be a marker. Being able to cross my legs in a sitting
      position is another marker – when it gets harder to do, I’m going down.

      I stopped the prednisone at 40mg, the day of my IVIG. I’ll see my neuro
      next wednesday…it will be interesting because he is well known in the
      field for being the best here for immune suppressants…that, of which I do
      not want.

      Miami Girl

    • August 6, 2007 at 5:48 pm

      Hi Miami,

      My tongue goes numb also. I have IVIG every 2 weeks but if I go longer, it will start going numb as do my hands and feet. Then after the IVIG, my tongue as well as my feet, hands, etc. will become more numb for a few days and then will return to “normal” after 3 – 5 days. Does anyone else who has IVIG treatments get more numb after a treatment? I know how everyone responds differently to different treatments. I also get aspetic meningitis from the infusion. Does anyone else get the HEADACHE? That is really painful. The doctor now gives me a Rx for demoral if needed.

      Good Health to All,


    • Anonymous
      August 6, 2007 at 6:18 pm

      Hi David

      I was told by my neuro, that if I got a headache, it could be from the infusion
      flow rate…in the beginning, years ago, I started at 40ml/per hr. Now I start
      off with 166ml/per hr. based on a 1000cc bag of 50g.

      You can take Tylenol and it will help.

      Good luck.

      Miami Girl

    • Anonymous
      August 6, 2007 at 7:27 pm

      Miami Girl and others, I have experienced similar symtpoms, inluding extreme facial numbness and transient hearing loss and vertigo and sensory disturbances, as well as developing Horner’s Syndrome (not related, of course, ahem). Its unnerving, glad you are getting some respite.

    • August 7, 2007 at 7:26 am

      I get the aspeptic meningitis with every brand it seems, lucky me. I have them keep the flow rate under 160, do the benadryl and tylenol, plus my doctor has me take 4mg of Dexamethasone in the morning before the infusion and for a day or two after. It seems to really help.

    • August 7, 2007 at 1:32 pm

      Hi Miami Girl and Herself,

      I have tried everything including solumedrol. The gamunex brand seems like I get them less but even this brand I still get them. I have been getting IVIG for about 5 years and have gotten headaches the whole time.

      Do you all get more numbness after an infusion? After an infusion, I get considerably more numb plus kind of sick. It’s like that old saying, “the cure is worse than the disease”.


    • Anonymous
      August 7, 2007 at 2:18 pm

      Hi David

      No, I get the numbness before I get or need an infusion. I use optigard as
      the brand for my infusion. It seems that within a few hours of the infusion,
      my fingers that bend towards my palm, relax and almost perfectly uncurl.

      As far as headaches, try benadryl…alot of people find that they need it
      either before or after the infusion.

      Good luck…

      Miami Girl

    • August 9, 2007 at 7:09 am

      My numbness never goes completely away but gets better after the infusion. Also, I thought being given benadryl and tylenol before the infusion was always done.

    • Anonymous
      August 9, 2007 at 3:50 pm


      I haven’t used anything before an infusion, or after. Some say they drink
      a lot of water during the infusion, but, heck, I have to tinkle at least twice
      an hour, so water is the last thing on my mind…lol.

      Miami Girl

    • August 10, 2007 at 6:42 am

      I know they suggest lots of water before and during but lots of water is a given with me anyway especailly when needles are involved, I’ve some veins that aren’t the easiest to get to. Anyway it’s standard at the infusion lab I go to to give the benadryl/tynelnol combo, helps with the side effects. I’m a problem child so I take the ‘roids orally before hand, the nurses told me they had one other person who needed them with the IVIg but they just put it in the IV.

    • Anonymous
      August 10, 2007 at 3:31 pm

      Hi Herself

      Have you thought about getting a port put in your chest? I love mine…I
      don’t have to worry about my veins getting “stabbed” each time. It frees
      my arms of all the tubing.

      Miami Girl

    • August 11, 2007 at 6:52 am

      I figured since I only go in one day every 5 weeks it wasn’t worth the trouble. The nurses at the infusion lab are great, always getting me on the first try. I want to go home, take off the band-aid and forget about it til it’s time to go in again.