Hi! New to GBS/CIDP

    • Anonymous
      May 21, 2009 at 3:03 pm

      My story is long. I’ll save that for another day;) . My question is, how many people have gotten back to work, either at their OLD job, or at a NEW one?

      I was dx in Oct 2008, and am still not back at work. My PT does not think I will be able to return to my former position. Am I alone in this?

      Are there some jobs/careers that are better than others for “people like us”?



    • Anonymous
      May 21, 2009 at 4:01 pm

      Hi Michelle, Welcome to The Family.
      I’m permanently disabled unfortunately, I would love to go back to my old job if I could. There are many here who are back to work, some who work with reduced hours and some who can’t work at all. I think its just as individual as this syndrome is. There are some states that have a disabled persons work force available to help find jobs that are available for those with special needs, hours etc. Take care.

    • Anonymous
      May 21, 2009 at 9:38 pm

      Thanks for the reply Cheryl. I guess I knew the answer to that one before I asked:( . Funny, for some things I can be so patient, but when it comes to wondering what “better” is for me, and when that will be, ……..blech.


    • Anonymous
      May 22, 2009 at 7:25 am

      Hi Michelle! There are a few in here that are working. But I am like Cheryl! Permanently Disabled. I know Perry is working and Stacey is working and Sue. Think there are alot more also! Just depends on the patient and their progress and treatment and some do okay while others don’t. So you still may have some hope left! Hugs
      Linda H

    • Anonymous
      May 22, 2009 at 8:30 am

      Welcome, Michelle. I was able to return to work 4 months after being diagnosed with GBS. I was teaching Phys. Ed. part time for grades K-8. I pulled it off to finish up the school year with the help of a very understanding staff. Went back the following fall term and had a very difficult time, but I did it. I wasn’t doing myself any good physically, but it sure helped the mental state. Half the battle is keeping fit mentally as we deal with the complications from GBS. I always felt if I could maintain a positive frame of mind it had a direct affect on my physical state.
      Unfortunately I was blind sided with other complications resulting in brain surgery, so no teaching this year. But my goal is to get back eventually.
      However, every one’s case is so different we have to listen to our own bodies.
      Good luck, keep us posted on your progress.

    • Anonymous
      May 22, 2009 at 9:19 am

      I guess I am a little frustrated with all the unknowns. First and foremost, all of my doctors do not agree as to whether I have GBS or CIDP. Great. I personally believe that it was GBS due to a flu vaccine that EVOLVED into CIDP. I have had four IVIG treatments, one Plasmapheresis, and three blood transfusions.

      I know this is rare (GBS and CIDP), BUT, I am disappointed that in this day and age, that there doesn’t seem to be more of a central pool of thought. Don’t get me wrong, after I was diagnosed, I feel I had excellent care. It just seems that after the worst has passed………..that you are kind of on your own. Makes me extra glad I found this site:) .


    • Anonymous
      May 22, 2009 at 9:54 am

      Hi Michelle,
      Welcome to the forum. I am very new to the group. I haven’t gone back to work yet and so far they are holding my job for me. I share your frustration with the unknown. That is what makes GBS a huge mental challenge. It plays with our minds with what if’s and when can I’s. I was diagnosed in Jan 09. My PT has also mentioned it will be a long time before I can get back to work although my disability carrier may disagree.

      Just a few days ago I finally came to a state of acceptance and ownership for this horrible condition. I think reading how many people on the forum have been affected and how many still suffer that I am determined to fight back more. I have kicked my exercises up a notch and I try things on my own, for example, I try to stand and take a step without holding on to my walker for dear life. I haven’t had a crying breakdown in a week now. It used to be a regular occurrence. A nurse recently told me this will probably be the only time I can take life slowly and I should try to enjoy that opportunity. In between the horrible pain I do try to stop and enjoy the stillness around me.

      I hope your recovery progresses so you can resume your work. Sometimes it just helps to know you are not alone.

    • Anonymous
      May 22, 2009 at 10:03 am

      Hi Michelle,

      I think it will depend on the type of job you have.

      I had a pretty severe case of GBS (it affected everything, with the exception of the left side of my face). I could hardly talk, definitely couldn’t use my hands and was in a wheelchair for almost a year.

      After extensive physical, occupational and vocational therapy, I returned to my part time job 10 months after being diagnosed with GBS. I didn’t go back to my full time job…although both jobs were office jobs (sitting), the full time job was very stressful.

      Five months after I returned to my part time job, I went to work full time at one of my old jobs.

      Stay encouraged!!

      Take care,


    • Anonymous
      May 22, 2009 at 10:21 am

      Hello Michele and welcome. I am 54 was 53 at the time of my GBS. I did push myself at pt and ot. I dont know if it helped my progress or not.I would go crazy on the squat machine. I would peel myself out of the chair afterwards and barely get in my wheel chair. The GBS went short of a vent, tho the top of my head was numb. I went back to work in 4 months but I am a construction supervisor and was able to set my own pase and prop my feet up when needed, I didnt have a boss looking at me because I was the boss, still am…LOL Any way there was a guy here that would say GBS stands for Getting better slowley. His name was Gene.if you want to look up some of his post. If you havent started a journal I would suggest you do that to look back on, for progress. Or read some of my early posts. I kinda went through my ordeal on this site too.

    • Anonymous
      May 22, 2009 at 10:45 am

      Hi Michele,

      I am one that works full time. I have a pretty stressful job but it’s an office job, sitting down 70 percent of it. I dont usually call in but every day is a struggle to get here. Some days I nod off at my desk for a second or two…but dont tell anyone that ok ? 😮

      I’m lucky to be able to work and dont forsee disability in my future. But, I am admittedly still in a big denial with many aspects of this disease.
      I’ll work until I have to crawl here.
      OR win the lottery.

      I have had this two years…CIDP…starting out with some numb toes to now both feet numb, sporatic numbness to the knees, hands sporatic numb , forearms, to the elbow…both sides. Weakness and balance issues with misunderstood fatigue. And, I use a cane to walk.

      I have an AFO that I should wear but dont b/c I washed my shoes that it was fitted for and have yet to buy anymore that it will fit. That’s denial again.

      I can retire from my job when I am 50 and get full benefits. I have 11 and 1/2 years to go and I dont want to give up the oppurtunity. I’ve put in alot of years here. 19 years actually.

      I hope you get answers and a proper diagnosis and I also hope you have an aggressive Dr that will do his best to get you to your best. You have found a great place to come for support and re-assurance, a place to vent, comment, or just “listen”…the people here are like no others…they all truly care and understand. They’ve been there and done that. Welcome. 🙂

      well wishes,

    • Anonymous
      June 3, 2009 at 8:08 pm

      Hi Michelle,

      I pop in here from time to time so I am sorry for a late post. I went down very fast and very hard last year in August. I’m coming up on my year anniversary! Woohoo! I was on vertilation with my eyes taped shut for about 10 days. I responded to plasma pheresis very quickly and worked really hard in PT. I was fortunate to come back very fast and went back to work on October 13. I’m an engineer and I work out in the field a lot so I travel all over the place and have to climb all over stuff. Like every one else I have to manage my energy level which still isn’t up to what it was. Unlike most people here I really never experienced any real pain. When things were coming back it felt real pins and needly, but it didn’t really hurt. So I can only sympathize with everybody, not empathize. I’ve been back to full throttle now for so long the GBS attack just seems like a bad dream now. Hope you recover quickly and keep a positive attitude. It works better than most drugs!
      Johnny Mac

    • Anonymous
      July 30, 2009 at 4:07 pm

      [QUOTE=michellemarie] My question is, how many people have gotten back to work, either at their OLD job, or at a NEW one?…



      Hi Michelle,

      I had a pretty bad case of CIDP back in 2003. I was able to completely recover from it and work full-time at demanding jobs in the years 2004-2009 (I was also able to go on 50 mile bike rides over hilly terrain!). But it is CIDP after all, and I have had a relapse this year. But I may beat it yet again. So it is possible to beat the monster some of the time. Good luck, and remember that you are not your disease.