Loss of taste

    • Anonymous
      March 4, 2011 at 10:38 am

      Has anyone experienced a loss of taste due to CIPD prior to the IVIG infusions?

    • Anonymous
      March 4, 2011 at 11:12 am

      prior to gbs attack, I had lost taste senses.. Things tasted metal like.

    • Anonymous
      March 4, 2011 at 12:09 pm

      Did you ever recover your loss of taste?

    • Anonymous
      March 4, 2011 at 2:26 pm

      Within a week or two got my taste buds up and running. I think they say the last thing you lose is one of the first to come back. Still have issues with other stuff relating to the gbs. Things like reflexes, walking, and balance were/are exciting to have back as well.

    • Anonymous
      March 4, 2011 at 5:44 pm

      My sense of tatse was altered. Everything had a metalic taste. The last two weeks before being dx I only ate cinnonmon toast and drank milk. My sense of taste returned on day 4 of IVIG. I still get that metalic taste occasionally, especially when tired. I posted this same question about a year ago and received many replys that taste was affected. I remember clearly when my taste returned, I was in the hospital, my wife went out to eat with my son and returned with a portion of a leftover pulled pork sandwich. I tried a bite and was so excited that it tasted so good.

    • Anonymous
      March 4, 2011 at 11:50 pm

      For quite a while, all my food tasted as if it had some kind of film coating it. Nothing tasted good at all but my taste finally returned to normal after about four months.

    • Anonymous
      March 8, 2011 at 11:01 pm

      Interesting. I have noticed some loss of taste recently. It’s not totally gone, but significantly diminished. The one taste I seem to have not lost too much is for sweets, so sweet foods are very appealing. This is not good, because I cannot stand to gain much weight! One of the most disappointing things is that wine no longer tastes like much (sigh…).

      I just figured it was due to general old age, never thought about the CIDP.

    • March 9, 2011 at 8:52 pm

      I know how alarming this can be… I’ve experienced the complete loss of my ability to taste food on several occasions over the past ten years. This has always been when circumstances have forced me to become overdue for an infusion of IVIG. (Eating truly becomes a chore when everything tastes like cardboard… No enjoyment in eating whatsoever!)

      Thankfully, my ability to taste food has always returned within 24 hours after an infusion.

      When I asked my neuro about this, she said the reason for the loss of the ability to taste food is that the CIDP has involved the cranial nerve.

      If this symptom occurs on a regular basis, it would be an indication that you need to increase the frequency of your infusions.

    • Anonymous
      March 10, 2011 at 11:06 am

      Strange as it may seem my loss of taste appears to be limited to sugar and salt. I can taste to a certain degree most other food. This occurred just prior to the onset of CIDP and IVIG infusions. However it has not gone away after the IVIG.

loss of taste.

    • Anonymous
      February 26, 2010 at 10:49 am

      I have read several post the past couple of days about numb tongue and strange taste. My first sign of this dreaded episode was waking up at two am and having a bug crawl in my nose. Really wasn’t a bug but sure felt like it and I tried to get it out for hours. My second symptom was My sense of taste changned, for threes weeks I ate only raisen bread and milk. When I finially got to see a nuero after 4 MRIs and two C scans and four weeks of slowly lossing all feeling in legs ,hands and back; he said that he has dealt with many GBS cases but never heard of losing a sense of taste. I see my nuero again next wednesday, if you have lost sense of taste let me know and I will bring your stories to him.
      My glass is not half full nor half empty, just happy to have a glass

    • Anonymous
      February 26, 2010 at 11:44 am

      Harry –
      My symptoms began with my mouth and nose feeling like I had been to the dentist & got “numbed up”. Nothing tasted good is all I really remember – onset was rapid & I was hospitalized quickly both times & unable to eat (feeding tube) for a while. I remember craving a diet cola & pizza SO MUCH. Then when I finally got my first taste YUCK! I had to work with PT to learn to chew & eat – I am happy to report I do a pretty good job of it now & enjoy all my faverot foods again.

    • Anonymous
      February 26, 2010 at 1:30 pm

      I didn’t have any change to my taste, but had horrible nausea, loss of appetite and trouble swallowing. I subsisted on bananas, chicken broth/soup, gatorade and Ensure. I lost 25 lbs. I am happy to report that my appetite came back intermittently and I am on a 2 week run now. Ice cream and cheese have been my best friends in the last week or 2 now that I am enjoying food again. (lbs are coming back quickly! eek. 🙂 Ate Uncle Bub’s (awesome BBQ place around here) the other day, yum. I do not take food or eating for granted anymore!

    • Anonymous
      February 26, 2010 at 1:37 pm

      I am in the state of if you want it eat it. That will need to end soon…maybe

    • Anonymous
      February 26, 2010 at 2:11 pm

      Harry, when this first happened to me right after my flu shot in November 2007, my head was affected first. A terrible headache that wouldn’t go away, then the reaction went downwards. Tingling in my mouth and jaws; then lost my sense of taste, had numb tongue for weeks, couldn’t chew without dribbling food out of my mouth, was biting my tongue and cheeks because I couldn’t feel them.
      When I’d try to swallow liquids, they’d dribble out of my mouth. Throat seemed sore, then I lost my voice, couldn’t swallow properly. Glands under my chin swelled up. Eyes started hurting, vision darkened (like when you get measles), extreme sensitivity to light and sound. Ears swelled up inside and lost part of my hearing for a many months. Pains in back of neck.

      After that it took its course by going down my spine, chilling my spine and body; I was ice-cold all the time, couldn’t warm my body. Lost ability to tell hot water from cold water. Started feeling prickles in various places on my skin. Sudden, unexplained, painful contractions began in all my muscles, arms and hands, back, then butt, legs and feet. Feet muscles contractions and tingling were excruciatingly painful; by this time nerve spasms and muscle contractions were happening every few seconds to every few minutes. Very bad over a period of 3-4 months, then began to lessen.
      Loss of bowel and bladder control early on in the onset; some nausea and vomiting at first, also a fine red rash on all my skin for a couple of days. NEVER ANY FEVER THROUGHOUT ALL OF THIS.

      All my chest muscles contracted severely one afternoon around Christmastime; had a terrible time inhaling and exhaling. Having past experience as a swimmer and in singing, I forced my diaphragm open and held my breath over and over again for hours. Also used my asthma inhaler.
      All this time, I could hear a sound like velcro being torn apart every time I inhaled. By the end of the afternoon, I could breathe again without this extreme effort. Completely exhausted. Tasted blood in my breath for days afterwards, and had extreme pain in the muscles of my chest and mid-back for weeks.

      For many weeks, the loss of taste continued; then the eggs in the egg carton seemed to stink. I complained to the stores, asking them to smell the eggs which to me smelled of manure. Many things seemed to stink. I lost about 20-30 lbs in the first few weeks. Sleep patterns were changed; could sleep only for a couple of hours at a time, when I could fall asleep; the pains usually kept me awake.

      Could no longer walk unaided after the first 3 weeks; used a ski-pole, then a cane, then a walker. Hair was falling out; fingernails were growing deformed. Contractions continued; felt my body fighting to heal itself; contractions continued, most terrible ones in my back, legs and feet; nerve spasms throughout. More healing; still more contractions. After several months, most of my hearing came back gradually. Vision was still disturbed: large white spots rolling around in vision all the time. Lots of symptoms of stroke: confusion, memory loss, couldn’t speak or read or write without mixing up letters, couldn’t add numbers, always making mistakes, dropping things. Right side of mouth hanging down for the past 2 years, now gradually improving. When having a shower, skin felt like being peppered with needles when water splashed on it. This was at its worst for about 8 months, then slowly improved.

      Now after 2 1/3 years since onset, I have extreme tiredness most of the time; can only walk like a duck waddling, or stalk like Frankenstein. Vision has improved more, but sometimes it flickers like a light being shut off and on again in a dark room. Still have tingling and contractions. Legs very swollen. Balance is very poor. Cannot regain former strength or abilities, but learning how to cope with what is left.

      [B]I still have many episodes of numbness in tongue and loss of taste, particularly when I have some allergic reaction or sensitivity to some substance in food or environment. Pesticides are the worst, including the ones in the newer toothpastes and dental products, or in foods that have aspartame or other products to replace sugar. Some of the newer food additives contain substances which deliberately numb the tongue, so the manufacturers don’t have to add as much sugar to the products, saving them money in the manufacturing process. I’ve checked the ingredients listed on the product packaging, and thrown out processed crackers, sodapop, gum, toothpaste, coffee creamers, because I can’t cope with what these substances do to me.[/B]

      Nowadays, numbness in my mouth, tongue and throat is usually one of the first signs that I’m slipping in the healing process, and having a little set-back; and then the contractions begin again. Never as bad as during onset, but still painful and damaging.
      But I am still noticing healing and improvements once in a while, every few months or so.

      If doctors ever had GBS or CIDP, they’d really know and understand what is happening. Sure hope that your doctor will believe you and help you, and be willing to learn the facts from the suffering you are experiencing. Throughout the first 1 1/2 years of my own ordeal with all of this, I contacted the medical office staff, hospital, flu clinic and nurses repeatedly for help, everyone I could think of, and told them many times what was happening to me, but they gave me no answers and did nothing whatsoever to help me.

      Sorry my post is so long; God Bless!

    • Anonymous
      February 26, 2010 at 3:52 pm

      years before I was ever diagnosed with cidp. I lost all sense of taste and smell. Saw a neurologist but had no explanation..we thought it was a chemical imbalance after having a baby. It has come and gone over the years. Sometimes smells are way over exagerated. The smell of celery for example can make me drive heave..did not even know celery had a smell!! I can smell it a mile away and have to lleave the room. Some purfumes smell like rotten meat to me.
      Like I said it comes and goes..sometimes it is fine and others none at all!


    • Anonymous
      February 26, 2010 at 4:36 pm

      hopalong, I had hypersensitivity to smells too, which has abated as my nausea has abated (probably connected). I had that with both my pregnancies too, so that is why I think GBS affects the hormones. I could smell an orange, like 3 people away. Mornings were the worst! People kept asking me if I was pregnant because it sounded like I was when I would tell them my symptoms! 🙂
      Harry, I am right there with you, eating what I want. When you have been through what we have, we deserve to indulge a little! 🙂

    • Anonymous
      February 26, 2010 at 4:40 pm

      D.U, I wanted to comment that I never had a fever either (H1N1 vaccine) and I had a rash too, all over my body that lasted for a week. I still have the rash on my torso, 3 months later in the morning…these vaccines are poison!! Still having hair loss. Our symptoms sound very similar, but it sounds like you had it a lot worse. I really hope that you continue to improve. Just think about those early days and compare. That is what I try to do…hard, but I try!

    • Anonymous
      February 27, 2010 at 11:42 am

      About eating, after I lost the initial 25 lbs or so during onset, I started to crave protein like never before in my life. Ground beef, milk, cheese, eggs, grains, all I could get and it was never enough to satisfy the cravings for it.
      I’ve noticed that if I don’t keep up the protein in my diet nowadays that I start losing ground again, more muscle weakness and more contractions. And then once I start eating lots of protein I feel stronger and better after a couple of days. You can really see the ups and downs of this condition in your own fingernails and in a single hair strand.

    • Anonymous
      March 17, 2010 at 2:50 pm

      I was taken by ambulance to the ER on 1/3/10 unable to walk. By the next afternoon, the numbness advanced to my face and tongue and also affected my vision. No longer being able to swallow, I was moved to the ICU. My sense of taste was gone for the next week. Everything I ate (mostly fruit) tasted lousy. I also experienced the feeling of bugs crawling up my nose as well as extreme tickling feeling inside my ears. These sensations still occur today, but to a lesser degree.