• Anonymous
      August 7, 2008 at 12:30 am

      🙁 Last month I had a setback.
      I had a high fever and went to the ER.
      I don’t remember going.
      I don’t remember talking but I did.
      The doctors took chest x-rays and found that I had double pneumonia that I had lost 25% of my blood volume. I had a colonascapy and EGD. My esophogis had ulcers, the doctor told me that it is the worst care that he has seen in years. The ulcers were blooding. He told me that I have Barretts Disease. Gave me meds and changed my diet. No coffee!:mad:
      No more cokes!:mad: No pizza or anything that is spicy or would be rough on it.

      Do you have times when you can’t remember?
      Is it GBS?
      Is it med?
      I just cant think right.
      I forgot the other day how to write a check.

      Do any of you have memory problems?
      Let me know what you think?
      I appreciate everyone on this forum.
      It has helped so very much.

    • Anonymous
      August 7, 2008 at 1:07 am

      Ohh yes! I get this way alot. Cognitive disfunction. It’s a symptom of a disease process. Seen alot in Lupus patients and MS patients along with other disease.
      I smoke and yes! I should not be smoking, but my nerves are bad from dealing with my illness. But am trying my best to quit.
      I went one day and had my ash tray in my hand with a burning cigarette. Opened up the refrigerator and laid the ash tray there to grab my soda and lost my cigarette and ashtray. I scrummbled the house looking for it to find it no where in site. Then I later found it!
      Called my mother one day and she has had the same number for years. Then one day I forgot the number. Could not think straight. Sometimes I am a perfect speller to suddenly not be able to spell. And my writing gets lazy looking.
      Cognitive disfunction can cause alot of things for people with illness. It is not deadly but just annoying more than anything else!

    • Anonymous
      August 7, 2008 at 1:10 am

      Look on the internet since you mentioned cokes. The Aspartame factor in certain sodas. People with bad immune systems need to avoid soft drinks. They alone can cause problems too!

    • Anonymous
      August 7, 2008 at 1:23 am

      Hi Kinney, Sorry you are having more problems. I’m praying you heal rapidly.
      I also have cognitive problems. It is worse during relapses, but it hasn’t totally ever gone away. My daughter has been teasing me recently because I type with 2 fingers and make sooo many mistakes, then i went to 1 finger and made twice as many mistakes:confused: Actually weds my daughter told my parents about all my mistakes in typing a simple sentence, they were concerned and were really confused as to why i made more mistakes while typing with just 1 finger, its not like there are fingers in the way blocking the view.
      I couldn’t even help my son with his math homework last school year, and his teachers don’t understand why he doesn’t get the help from me. I use to be a great speller and very good at math and numbers. Now i can’t even remember a 4 digit lottery number for longer then 2 mins. Not a good thing when my old job is working in a teaching hospital’s fileroom.:eek:
      I try to solve sudoku puzzles to keep the mind going, and do crossword puzzles to help with words and spelling, puter games are also helpful.

      Hope things turn around for you, Kinney. Take Care.

    • Anonymous
      August 7, 2008 at 3:19 am

      [FONT=”Comic Sans MS”][SIZE=”3″]Kinney,
      Sorry to hear about your set back, and hope that you’ll feel better very soon.
      i sometimes think that this brain fog or short term memory problems are the brain”s way of coping with the assault on our bodies caused by the syndrome.
      Sometimes a little memory loss can be a good thing, especially with regard to pain.
      Keep fighting and never give up hope. Wishing you the best,

    • Anonymous
      August 7, 2008 at 8:39 am

      I’m in a doofy spell this morning! Cheryl! You got me laughing. It’s not funny but you mentioned …. ugg ohh! I read your posting to suddenly forget what I was going to write! LOL! Yep! Linda is in cognitive mode today! When I was young and in school I did great. But… ohhh..okay! I remember now. The lottery ticket!
      If I heard my lottery ticket numbers and won! I would remember those numbers! Getting rich would certainly make my day! LOL! Need some luck somewhere!
      I’d hire a cook, a nurse, a housekeeper and what ever I needed.

    • Anonymous
      August 7, 2008 at 8:13 pm

      i have memory poblems every day. the doctor tells me it is
      not related to gbs but maybe my medicine. i dont buy it becuse i have cut back on my meds. nothing for pain but tylenol i was driving the other day and got completly lost i thought i was going to have to call someone to come and get me.

    • Anonymous
      August 7, 2008 at 9:26 pm

      Kinney, I am so sorry for the setback. It’s just a really tough place to be 🙁

      Let’s see, something about memory problems :confused: Oh, like forgetting the laundry in the washer, the water on the flower beds, which way to town, is that my husband coming in the door (:D ), did I already tell that to the person I am talking to . . . I firmly believe that it’s not just meds because I didn’t even have Neurontin until 5 years ago!

      Please remember that your family here cares. Hugs to you.

    • Anonymous
      August 7, 2008 at 10:31 pm

      hah..memory..what memory. my family says they are going to carry index cards around so when i start repeating mself they can hold up a card and say we already discussed friends love to have me around because they can tell me something and i get all excited about it every time because sometimes i don’t remember that they have already told me. i have to focus sometimes on doing the every day life things and at first it really upset me but now i just try to joke about it. since it’s something i can’t change i have to find some humour in living with it. however, when it comes to numbers i get so confused and that is a problem with the check book and paying bills..that definitely stresses me out.

    • Anonymous
      August 8, 2008 at 11:11 am

      Okay, so I am not crazy!! If it isn’t written down in our house it doesn’t get done! I can’t remember a lot of thing either, but I am also 54 and expect some memory loss with age. Stress also affects our memory and this illness is stressful in and of itself! I think the meds, the illness, age, strss, and other factors are why we all are forgetful!

Set Back

    • Anonymous
      April 10, 2008 at 8:32 pm

      I am new to the website. I was diagnosted wtih GBS on September 20 2007. I was hospitalized from then till December 19 2007. Once I was home I using the walker to get around, then around mid January I was walking wwith a cane untill the begianing of March when my leg muscles decided to weaken. So now I am walking with a walker but tring to go with out it for the past few days. On April 4 I noticed that my lips were tingling so I went to the er and it had nothing to do with GBS but an allerigic reaction to something, but it hasnt got away and now it has progressed to my hands and more parts of my face. I was wondering If any one has come across this type of progress. Any help would be appreiative at this point.


    • Anonymous
      April 10, 2008 at 9:03 pm

      Hi Lindsay,

      I wish I could tell you what your symptoms are telling you… I know they tell you for the most part stuff can’t come back, but I’ve had some relapse issues… I think you had better get in touch with a neuro or a nurse practitioner regarding this and be seen… I came down with this in oct 2007 and had at least one relapse (actual emg nerve damage shown, although I don’t know how effective emg tests are, but thats for another discussion)…I hope some other folks can chime in as well with their opinions…Good Luck…deanop

    • Anonymous
      April 11, 2008 at 10:11 am

      How did they establish that it’s an allergic reaction and not GBS-related? It seems awfully coincidental that you’d have issues with tingling (which is usually nerve-related) so soon after GBS; it seems a bit “off” to me just to have it dismissed as an allergic reaction.

      Also, there are many shades of gray between “not GBS-related” and a full-on relapse. Many times, tingling can indicate that nerves are remyelinating, so while it’s annoying and uncomfortable, it can actually be a sign that something is going right, believe it or not. And since it’s so soon since the acute phase for you, that might be a possibility. I had a TON of pins and needles during the first 6 months post-acute phase, and my neuro seemed pretty unconcerned because of how much my nerves should have been healing at that time.

      However, what should really concern you is not the tingling but if you actually start experiencing a recurrence of weakness, complete numbness, or difficulty moving. Those things can indicate further degeneration. Do you have any of those symptoms along with the tingling? If so, it might be worthwhile to consult your neuro about getting another EMG to measure whether or not your nerves are getting worse. It’s unlikely but not impossible.

      I know it’s hard not to worry at every little thing after going through such a horrible health trauma, and I’m totally not trying to dismiss your concerns. Rather, I’m just trying to reassure you that this might not necessarily be something bad.

      That being said, though, since the tingling is actually spreading and not just staying in one place, please call your neuro’s nurse to report this if you haven’t done so since your last visit. Anything new should be reported to your doctor ASAP so that s/he can make the final call on what does or doesn’t need to be investigated further. Your neuro may very well want to see you for a current exam to measure whether it’s just tingling or whether any new weakness is present.

      Good luck!

    • Anonymous
      April 11, 2008 at 3:06 pm

      I just had my first EMG done this morning and my nero found that my nerves are slow conducting the signals in my legs. I wish he done one at the begianing of my illness to see a comparession. I saw him on Wednesday about my tingling in my lips and hands but he didnt do much but he examined me today with the weakness of my legs and will see me in a month to see if they have improved. Today in thearphy my legs decided to work and not be too straining like they have been within the last month. So Im happy about that.

    • Anonymous
      April 13, 2008 at 8:43 am


      let’s hope it is your residuals. during this month till you visit your doc again, rest lying down as often as possible & do much less. no improvement is indicitive that it is not your residuals & your doc should rx ivig. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 13, 2008 at 10:26 am

      Hi Lindz, Welcome to The Family. It doesn’t sound like an allergic reaction to me. As Gene said, Rest more and if no improvement than it could be a relapse. Take care.

    • Anonymous
      April 17, 2008 at 9:29 pm

      well I went to a new neuroalist today that specalizes in neuro musclalar dieases and he diagonised me with CIDP so I have to start IVIG treatments every month and dont know when that will start. So I am tring to stay strong and deal with this new matter in my life

    • Anonymous
      April 17, 2008 at 9:44 pm

      Welcome to our “family,”

      You have made it through the most important part! Getting a diagnosis and treatment plan is sometimes very difficult. Wishing you better days ahead!
      Hugs from Iowa…

    • Anonymous
      June 24, 2008 at 10:50 am

      just wanted update everybody. I did repsond well to the predozone and the IVIG treatments. I am almost back to my pre diagnosed self from september 2007. I hope to start to wean off the predozone in August and hopefully that wont set me back. I still am finding that I get tired easily and dont know when to stop but I guess thats something I have to learn.

    • Anonymous
      June 24, 2008 at 11:18 am

      Thanks for the update; I was thinking it was probably CIDP when I read your first test, but didn’t want to mention that yet. I am glad you are finally getting the proper treatments & that they have worked so well for you. That probably means you have the relapsing/remitting for of CIDP & not the progresswive form. About the fatigue, you will just have to learn to live with that & get the proper amount of rest and sleep. For me that means 10-12 hours per day, then I feel almost normal. Actually, after over 6 years with CIDP I am not sure I even remeber what “normal” felt like…

    • Anonymous
      June 30, 2008 at 3:16 am

      I went through some similar things that caused my legs and hands to go tingly then numb and movement basically stopped at the same time. Though the NCS showed normal or at leeast better then they were when I first got GBS. It is thought what happened is just residuals, this baffled me at first because it affected areas that had previously been unaffected.

      Recovery is slow as theey refused to do IVIG or anything else for that matter but I have gotten my hands back for the most part aside from some weakness. Hope this helps. Take it easy and get lots of rest as you will soon find out you will need it more then ever.


    • Anonymous
      July 2, 2008 at 5:58 pm

      I am 8 years GBS and have always had residuals.You know etc, etc.etc.etc.I have been having extreme numbness and weaknesses, with no reflexes.I work in a hospital.My eyes are drooping so badly right now. Can’t have the strenght to brush my teethe.I’m scared. Hopefully I just need to rest. \You too.Take care, xoxoxoxox Roxie