My GBS experience

    • Anonymous
      February 20, 2007 at 6:42 pm

      They say it starts with the patient having had a virus of some kind………to the best of my knowledge, I haven’t been sick in over a year. The virus then turns the body’s immune system on itself which manifests itself in attacking the nerves in your extremities, your hands and feet.

      I noticed a numbness and tingling sensation in my right hand late November 2006. I thought I had just pinched my shoulder during a workout, but that obviously wasn’t the case. Within a couple of weeks it had spread to my left hand and by early December into my toes. By the end of the first week of December I felt like I was walking in Novocain boots up to my ankles and at times was unsteady on my feet. My family Doctor had correctly diagnosed the ailment early in the process, but because I didn’t have the normal traits….ie. a rapid onset of symptoms……as I have read here this takes over a person within 48 to 72 hours…..I went against the grain.

      My Doc sent me to the ER on December 8th; however, they weren’t able to correctly diagnose what I had…..they also did not take spinal fluid from me which would have given them a correct diagnosis. The next day I shampooed the rugs downstairs with no ill effects, but Sunday late afternoon the entire left side of my face drooped……..I thought I was having a stroke, but my wife thought it looked more like Bell’s Palsy. Back to the ER and they diagnosed me as having Bell’s Palsy….incorrectly.

      I saw my Doc again the next evening and he thought I should see a Neurologist which I did on Wednesday the 13th. He was a spry 82 year old with a black bag and self deprecating sense of humor and I enjoyed my time with him immensely. After about an hour and twenty minutes he said I could get dressed and that he was going to take me downstairs. I asked him why and he replied that he was going to admit me into the Hospital (Abington). I again asked why to which he stated, “you don’t have Bell’s Palsy you have Guillain Barre”. I asked what was the difference and he calmly stated that Guillain Barre could kill me………………..he had my attention.

      I spent 5 days in a private room with a daily IVIG infusion that took about 6 1/2 hours. I was released on Sunday the 17th to go home and get better. I can’t say enough about the Nurses who cared for me.

      Since the beginning of February I’ve had a reoccurrence of symptoms which is not unusual, but I feel much stronger now. I’m taking Neurontin 300 MG every 6 hours and that seems to stem the extreme tingling in my hands. It has almost totally left my feet. My face ……..well I still look like a stroke victim and can’t smile on the left side. By summer I should be 100% recovered.

      The weekend of 2/17 I was just able to start lifting my left eyebrow independently of my right and my right cheek also goes up when I try and smile. Still no smile, but it will come.

      There’s also some side benefits from having this. Because your immune system is out of wack and repairing itself I’ve had a spike in blood pressure which I’m taking medication for………I have gotten something called eczema which is a skin ailment for which I now have a cream……… left eye does not close all the way which when exposed to air overnight, has created a horizontal raised ridge across my eye that’s an irritation to say the least……..I have an ointment for that too. And my sense of taste was affected leaving some foods I really like tasteless. The only benefit from that is that I’ve been able to shed some pounds making my Doctor extremely happy.

      I just got “nicked” by this. To read the horror stories on this website, I am incredibly lucky that it came on gradually. Most patients end up on respirators. My recovery time is measured in months……not years like most folks. I am incredibly blessed to have the support of my close family, that I work for Johnson & Johnson which has a full pay short term disability program, and that I am able to keep myself busy reading and splitting wood for my fireplace insert to heat my home. I have re-taught myself how to play chess……..only problem is that I have no one to play with so I’m about to buy a computer program to play against…..heehee…..and get my butt kicked.

      There’s not much folks can do for me expect to continue to pray……pray that I get some patience. Guys unfortunately do not have a woman’s sense of patience…..we want it now and I need to just sit back and let things take their course…..and know that it’s on His time, not mine.

      Lesson to be learned here??………..enjoy your good health and never take it for granted. My wife keeps telling me that God is just trying to tell me something here……..I just need to figure out what it is…..heehee…..all in good time.

      Thanks for taking the time to read and if I can help someone here, please let me know.

    • Anonymous
      February 20, 2007 at 8:07 pm

      Hi and welcome to this forum. I am glad that you have such a positive look on this. Getting better from GBS is different for everyone but one thing is common it is a slow process. We say GBS stands for Getting Better Slowly. Just remember to rest when needed. Stay positive and take all the help offered to you. You will have to be patient this time. When I was first sick in Jan 2004 I thought I would be back to work in a month or so. It took 2 years before I could return part time so I had to learn patience.

      Good luck and best wishes from Australia

    • Anonymous
      February 20, 2007 at 9:26 pm

      I also had a slower onset of GBS (and mild case) which made for difficult diagnosis. By the time they decided what was going on, I was on my way to recovery. It has been 6 full months since I was hospitalized. I am back to work, but have residuals (burning cold, buzzing, pain) that keep coming back, especially when I am tired. Be sure to rest, rest, rest!!! I’m glad to hear you are on the road to recovery!!

    • Anonymous
      February 20, 2007 at 10:31 pm

      [B][FONT=”Arial”][COLOR=”SeaGreen”]Thank you Debbie and Iowagal for your warm welcomes. Reading the posts here just reinforced how fortunate I have been with this illness. I re-strung my guitar last Friday and have started playing every day for at least 30 minutes. It’s been very difficult with my coordination being compromised, but I’m sticking with it in spite of it all.

      Everyone here says to rest and rest and rest. That’s not normally my nature and can I be hurting myself by trying to do too much? And what really is too much? I’m interested to learn.

      I also want to be of help to anyone here who might need encouragement. Sometimes a good listener is far better than a great conversationalist.


    • Anonymous
      February 21, 2007 at 10:18 am

      Welcome to the forum! Take it very easy. You may (or may not) learn the hard way to take it slow and get plenty of rest. It has taken years to understand that my body has changed and along with getting older, I have finally accepted I have to slow down.

      I too had a mild case and slower onset (1 week), but here I am 10 years later with problems as I type this. I do work 40 hours weekly, and since I am single I don’t have very much of a social life – it is work and home to bed most days. I am grateful that I can take care of myself.

      You’ve got lots of reading ahead of you on this forum – that should keep you sitting still for a little while 🙂

    • Anonymous
      February 21, 2007 at 10:40 am

      [COLOR=”SeaGreen”][FONT=”Comic Sans MS”][SIZE=”3″][/SIZE][/FONT][/COLOR]I can understand the guy’s lacking in patience. I did get a severe hit with the GBS. I’m getting better and at one point about a month ago was alot better than I am right now. This is a patience and tolerance learing experiance. I’m sitting here right now and it’s 60 degrees and sunny outside. My feet are burning too bad to stand on them. I’m going to get up some gumption to go outside and absorb some of this vitamin D while I sit in the hot tub. Remember one thing, it takes awhile for you to get a balance with your body and it telling you to rest and not over do things. They told me my relapse was from over doing my exercises. I have to get used to this and it’s not my nature to take anything easy. Hang in there . If you need me I’m here.

    • Anonymous
      February 22, 2007 at 5:49 pm

      [B][COLOR=”SeaGreen”]Chrissy and Thray (Tim)…..I can’t thank you enough for your guidance and welcome’s.

      I agree Tim, it is not a man’s nature to rest and be patient. I’m certainly not an “A” Type personality. Chrissy, I have been doing a considerable amount of reading here; even before I was “approved” to begin posting.

      Everyone asks me to repeat what I have twice and then they say, “I’ve never heard of that.”. I guess it good to educate them too which I have taken the time with each and every one.

      I’m curious if anyone else’s sense of taste was affected by this. One of the only things that still really tastes good to me is chocolate which I eat in moderation, but some of my all time fav’s such as peanut butter and baked chicken just don’t have the same taste. It’s helped me lose a few pounds which is always a good thing, but I just wonder if that will come back….my sense of taste?

      Thanks again to you for responding. I appreciate it and I’m also here for you folks too.[/COLOR][/B]

    • Anonymous
      February 23, 2007 at 2:07 am

      hi snevets82, welcome to the family. i have lost my sense of smell, but it was gone before i came down with gbs. i can eat spicy foods and not even know it, except when it hits the stomach.:rolleyes: so far mine hasn’t gotten any better, but then again like i said i had that problem well before 8/05 when i had my first paralysis event. i use my memory to taste foods-sometimes its better then it looks especially if i made the food.:D

    • Anonymous
      February 23, 2007 at 5:04 pm

      [B][COLOR=”SeaGreen”]Cheryl I’m so sorry………my sense of taste is just “off” a little. I haven’t lost it completely and some tastes have returned. I get reminded everyday I come to this site of how incredibly lucky I have been in that I had a Doctor who knew what this was right from the get go…..that I got to see a really good Neurologist early…..and that I got the IVIG treatment almost immediately upon entering the Hospital.

      To read the experiences of others in here serves to continually remind me of how fortunate I am. Most folks suffer with this immensely. My “inconvenience” is nothing compared to others.

      I will continue to offer support to others on these Boards as that’s what I can do best[/COLOR][/B]