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!

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!

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.

[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,
V[/SIZE][/FONT]

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.

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.

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.

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 that..my 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.

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!

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

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!

lindsay,

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

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.

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…

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…

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.

Sonja

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