New GBS Member – in Recovery

    • March 12, 2008 at 9:36 pm

      Hi All,

      I am SO thankful I found your website! I was diagnosed with GBS on 1/9/08. I was immediately admitted to the hospital and received the ivIG treatment. I also had a lumbar puncture and EMG, confirming the GBS. After a week in the hospital (breathing was never affected) I was released to my family and home.

      I KNOW that I had a “mild” episode of GBS, or that because I received treatment so early in the progression of the syndrome, my symptoms were not as severe as they could have been. Because I am a teacher, I started a blog for my students and family so that they could keep up with my progress <>.

      I have returned to work, but still struggle with day-to-day issues: fatigue, tingling in my extremities, and general weakness. There are “good days” and “bad days.” Earlier this week,I thought I was having a relapse because it felt like the whole “tingling” thing was starting all over again. I went to see my primary care doctor. He noted that I was the strongest that he had seen me since the hospital and suspected that what I was feeling was my nerves remylinating.

      I am often frustrated my the slowness of my recovery (I have run two marathons in the past two years…) but find that I am humbled by stories of other GBS/CIDP patients on this site.

      Thanks, all, for providing this excellent resource. I look forward to reading more!

      Tom Merrill

    • Anonymous
      March 12, 2008 at 10:24 pm

      Hi Tom,

      Welcome to this great family…. Everyone here has been a great support to many people including myself. I too am a teacher, I teach special needs students ages 3-6. I was diagnosed 9/5/07 and spent 6 weeks in the hospital and then continued with outpatient rehab for 4 weeks 3 days a week. I returned to work 1/2 days on 11/1/07 and then full days on 1/22/08. I continue to have tingling in feet and hands and lots of fatigue. I rest lots especially in the evenings. It does take a while to build up strength and endurance. I have just been given the OK to do theraputic exercise at the health club to build up my endurance of walking, and cycling.

      Take your time and listen to your body… as someone here told me GBS is Getting Better Slowly.


    • Anonymous
      March 13, 2008 at 12:24 am

      Hello and welcome Tom.

      I glanced at your blog and intend to read it tomorrow (actually, later today). I think its wonderful to write down your experience from the beginning, not only is it cathartic, but I think it could be of great benefit to some of your students.
      Your doc is probably right about the remylenating, but it could also mean maybe you need a little more rest? ๐Ÿ˜ฎ How frustrating it is for us all to try and do things that were so easy back whenever, but just remember (and I dont have any doubt you ever forget), that this isnt a cold that goes away in a short period of time, and whatever you do its not a matter of just pushing through, to do that would be counterproductive. Please, please take it easy, you do seem to realize that this is something you have to watch out for. Its fantastic that you got your IVIg so soon, that can be such a great help in the recovery process!

    • March 13, 2008 at 9:52 am

      Thanks, Colleen and Alison,

      I take a nap every day after work, and try not to get into the office till 11 or so. I used to have a very full schedule, and it is hard for me to “slow down.” I have been goingm to the gym this week – just for 15 minutes on an eliptical machine and some stretching. My wife and daughter are especially vigilant that I get enough rest!

    • Anonymous
      March 14, 2008 at 9:24 pm


      It’s nice to meet you, welcome to our family. Please take care.


    • Anonymous
      March 14, 2008 at 10:10 pm

      Hi Tom,

      Welcome to this website. It has been a lifesaver for me over the past year. A LOT of very caring people who you may never meet! They had more answers than my neurologist as to what was normal and not normal, etc. Like the others said, rest as much as you can, even so that is hard. I used to swim 5 miles a week and now am biking for my exercise. I just can’t walk right, but I can bike OK. And keep your blog going or keep a journal. It will be helpful to look back and see your progress. Take care, Gabrielle

    • Anonymous
      March 15, 2008 at 8:18 pm

      Hi, Tom,
      I was a middle school teacher – Gifted Math & Science and regular geography in Tampa. My GBS hit its peak in 10/10/06. I was able to stand 4-5 months later, but I missed the 2006-07 school year. My principal told me not to come back the 2007-08 if I could not promise that I would be able to last the entire school year. Nice, huh? Since I did not know if I could handle a full year, I had to retire so I would have money coming in. (She was accused of embezzling money a few months after this school year started. karma) I am concentrating on keeping stress out of my life. I overestimated how much better I was. JUSt live in the now and be grateful that you did not have it as bad as many of the people on this site. IF you go back to the old threads, you can read some tear-jerkers. Then you will feel blessed. Good luck in your progress and just remember that nerves regenerate one MILLIMETER a day – the width of a pin. I still feel tingling 17 months later and numbness in my feet. I am using this time to look inward.

    • Anonymous
      March 16, 2008 at 7:49 pm

      My husband got GBS over 5 years ago. When he was first hospitalized and on the vent is when I first started on the forum. I honestly don’t know what I would have done if I hadn’t of found this site. Whenever I had a question and there were lots of them, people on the forum would share their experiences along with their well wishes and prayers. It was so much help to me. We have also attended some of the GBS conferences in Canada.

    • March 16, 2008 at 10:51 pm

      Thanks, Jerimy, Gabrielle, Carolyn, and Sandie,

      I am happy to say that I was just granted tenure and a promotion by my university. What a relief ๐Ÿ™‚

      Many thanks for your kind thoughts and well-wishes. I am still trying to figure out what is “recovery” and what is “fatigue.”

      This group is such a great resource/comfort/help!




    • March 19, 2008 at 11:15 am

      Welcome to the GBS family.

      I had GBS in 1995. I have now been diagnosed with CIDP. I have 3 to 4 episodes every year. Some are mild and some are severe and last for a couple of months.

      I would say listen to your body. When your tired and stressed, try to slow down and rest your body when you can.

      I have learned that stress plays a big factor in my CIDP.


    • Anonymous
      March 19, 2008 at 12:10 pm

      Welcome, Tom. Sounds like there are alot of teachers among us. I was diagnosed late ’04. I teach 3 days a week. There is no way I could do it every day, I teach P.E.
      Sounds like you were very active befor the GBS. It is even more frustrating when you expect more out of yourself than your body can give.
      As everyone says, take it slow.
      Take care.

    • March 19, 2008 at 10:49 pm

      Thanks, Greg,

      The most telling symptom of my syndrome at this point, I think, is my fatigue. I always sleep in, and usually take at least one nap per day. That seems to helop (the nap…). I am hoping that the tingling in hands and feet will diminish. On a day-top-day basis, it is very difficult to tell if it is getting any better.

      I would be interested to know from others who have recovered from GBS how soon, and in what manner the tingling sensations went away.



    • March 20, 2008 at 11:19 am

      Hi Tom,

      In 1995 I had a mild/moderate case of GBS. It took my doctor a couple of months and a spinal tap to diagnose me with GBS.

      The hardest part for me was the fatigue. Next was the tingling of my arms and legs. They also felt like they were on fire.

      To make a long story short, it took me eight months to where I could go back to work part time. It took that long to where my arms and legs started to feel somewhat normal again.

      Several years ago I was diagnosed with CIDP. Several times a year I get relapses. Some mild, some moderate. I have learned stress plays a big factor in these.

      I have to admit when the relapses happen, I still get very scared and hope it’s not a repeat of 1995.

      That’s my story in a nutshell.


    • Anonymous
      March 20, 2008 at 5:21 pm

      I was also a teacher when I got hit with GBS, but was rediagnosed in 6 weeks with CIDP when I kept getting worse. I did not make the good recovery & was forced to go out on disability 6 years ago at age 49, long before I had originally wanted to. I still walk with AFOs & a cane & suffer daily with fatigue. But life goes on. BTW I taught English in math in our local high school. Can’t stress rest enough!

    • March 20, 2008 at 10:15 pm

      Thanks Greg and Pam!

      I saw my doc today and he said that I am the strongest he has seen since my encounter with GBS. I am STILL tingly in hands and feet (especially hands). He is not too concerned as he says the nerve regeneration is the last thing to happen (because it takes so long).

      I do feel stronger every day, and I think the gym is helping. When I got home today from work, I took an 90 minute nap – that helped ๐Ÿ™‚

      My prayer is that CIDP will not become a regular part of my life, as it seems to have with so many other GBS patients. Time will tell, I suppose. I will just keep on working day-to-day and see how it goes.

    • March 21, 2008 at 12:32 am

      Just in case you are re -diagnosed, do not despair. I used to think cidp was a death sentence for my eleven year old, but I am more at peace with it. It seems like those with just gbs struggle a long time, even a life time. Some get the post polio type syndrome ten years later. Some recover fully and never here from gbs again. For those who do not hold that fortune, the road can be bumpy.

      Although the monthly treatments SUCK, sorry, no other way to say it, at least they are treatments. Kevie was at the doc today, and he is near 100% except his fingers. I suspect a couple of more treatments and he will be there, holding steady. The medicine does this and it gives us hope. It is essentially reversable (the damage, and sometimes the disease)

      So do not worry which way you will go, both have their long term advantages and disadvantages and unfortunateley we are just standing at the black jack table waiting for the next hand to be dealt with no control of the outcome. We just have to take what we are dealt and manage with it.

      You sound like a strong individual, whichever fate is your destiny, I know you can handle it. Good luck to you in this journey!
      Dawn Kevies mom

    • March 22, 2008 at 9:59 pm

      Thanks, Dawn,

      Please know that you and Kevie are in my prayers! It seems I have a LOT more people to pray for since joining this list ๐Ÿ™‚ BUT, this is a true comfort and source of support. I live for my small victories- being able to button the cuffs of my sleeves, going downstairs without holding on to the railing, cooking Easter dinner for friends that we haven’t had over for three months!

      I have surgery on Monday to remove a basal cell sarcoma near my eye that I was supposed to have removed before I contacted GBS. Time flies… Be well, ALL!!!!

    • Anonymous
      March 24, 2008 at 7:25 am

      Tom, good luck with the surgery today. I’ll send a few prayers that all goes well.

    • March 24, 2008 at 5:49 pm

      Thank JayDee – all went well. At home and patched up – I’ll be a pirate king for a week till the eye patch is removed ๐Ÿ˜‰

      NO exercise for two weeks, though – that is a bummer. I was just getting use to going to the gym everyday. I am allowed to take “brisk” walks. Hah! I am frequently passed by 70+ year-olds on the track at thy gym. Maybe a sedate walk will be possible…


    • Anonymous
      March 24, 2008 at 6:26 pm

      You have found the best and most knowledgable group in the world. They have been a life savior for me. I was dx with CIDP with Anti-Mag, IgM Spike in Nov. 2007.
      Wish you best with your surgery and your recovery

    • Anonymous
      March 24, 2008 at 11:22 pm


      Hang in there. It does get better as you learn your limits and how to manage your energy. If you ever need anything feel free to email me jerimyschilz at hotmail dot com.

      Take care,

    • April 18, 2008 at 10:56 pm

      Hi All,

      I AM doing a bit better each day. I know my strength is returning, and I can now spend an entire day at work without needing a three hour nap ๐Ÿ˜‰

      It is so comforting/secure to know that there are so may others (who knew???) going through this (and many who have had it worse!).

      The tingling is still persistent in my hands, feet and torso. I know this will continue to improve, but it sure takes a LONG TIME to get better.

      It has been warm and sunny in Cincinnati (finally!) and tomorrow I hope to spend a few hours clearing out my vegetable garden, rain permitting.

      I wish all of you a renewal of spring – physically AND seasonally!