New to GBS and worried

    • Anonymous
      October 6, 2008 at 4:10 pm

      Hi everyone,
      I have been glued to this site for the last month. I started having symptoms on 7/14/2008. At first, I thought my shoes were funky so I tried different pairs. I think I went thru 10 pairs. My feet felt like hardened crushed sand at the bottom of feet. By 7/21, I noticed my gait was awkward and balance decreased. I went to my doctor on 7/24, and she said I was just getting old.( I am 58). She did a complete work up and only found that I had a severve urinary tract infection ( I had no symptoms). That weekend, I walked up a curb in the parking lot and fell. Went to ER, and they said I did have something going on and needed to get appointment with Neurologist. Went back to my doc on 7/28 and she wanted to just put me on neurontin. I work in rehab, so by now I had was sure I had GBS and told her I needed a neuro consult asap. She told me it would take a month to see one. I told her to call asap or admit me to hospital. I handed her and article on Guillain Barre and told her to read it and then get on the phone to a neurologist. She finally did and the neurologist said to get to his office asap. Once there, the tech did the nerve testing which did show I had GBS. I was lucky in that, the damage was to feet and halfway up calves and my fingertips. I could not move toes backward, ( could move alittle forward) or move ankles up( could move down). My lower legs were decreased in sensation, I would not say totally numb. My fingers were numb. My balance was poor. The neuroligst felt we should just wait out the disorder as I was already thru the worst of it due to time lines. He did not want to do plasma exchange of IVImm unless he had to due to side effects. He did ask if I wanted physical therapy, but I declined as I felt I could do exercises at home. I was walking with aide of quad cane. Stairs were a bear, but could do if I had a railing

      It is now going on two plus months and I feel I have not had any improvement and if anything decreased in balance. The paresis not moved but my feet have less movement, seems heavier. Most of the time my feet are so cold, but lately, they get warm and I notice swell alittle. I wake up with ability to moved my toes, but once I start walking, my feet feel as if they are swellint and the range of motion seems decreased. Most of the strange clumping and swelling feeling are on the bottom of my feet. My balance is shot.. When I first went to the neurologist, I used a quad cane. I decided to use a rolator as this seems better. I could furniture walk. Now, I feel if I do not use rolator I would fall., My hand now tingle and my writing is horrible. I know that deconditioning happens due to lack of nerve impulse to muscles. I was hoping for some improvement by now. I am just wondering if anyone had a mild case like mine and how long before they started getting return of movement. I keep reading about CIDP and wonder if my progression of weakness could be due to this. I still am working full time, as I only took off two weeks. What should I start feeling if I am improving. One thing that I notice is I am not as fatiqued. Any ideas would be appreciated. Bless all of you, Carol

    • October 6, 2008 at 4:47 pm

      Hi Carol

      welcome to the family. My case was similar to yours. So-called mild. Mine reached my head and face, but didnt affect my breathing enough to send me back to the ER (was told I was crazy and nothing was wrong with me…very humiliating especially when one dr insinuated I had AIDS and that is what was causing my problems). I started feeling an improvement about 3-4 months after onset. I could actually sort of climb a small flight of stairs by then. I felt at times I was getting worse rather than better and was very scared. Sensations would be really bad then seem better, I could walk some days with just a bit of a limp and on others I could barely drag my feet. I am not saying CIDP isnt ruled out in your case, but a follow up sounds in order. In my case, CIDP was ruled out (2 years after the fact). I still deal with residuals, but it has gotten better. Some people deal with residuals all their life, never completely recovering and being 100%. You may notice in a year or two you DO completely recover, it is an individual thing and none of us can predict an outcome. I do hope you see your dr soon just to ease your mind or get treatment if needed.

    • Anonymous
      October 6, 2008 at 4:51 pm

      Hello Carol, welcome to the site. I had my GBS almost a year ago. Im 54 and my feet are the last to heal.An old timer here always said GBS means “getting better slowly”.My stamina returned before I started seeing improvement.I was hit up to my neck with a little on my head at the top right side.If you are still proggresively getting worse, I would push for IVIG treatment.My feet ,legs ,arms ,hands and buttocks would buzz ,with pain ,with any movement. You are fortunate to be able to work,but you must take into account how much that work is hurting your proggress.
      Take care
      Ps I got the ivig treatment with in a few days of symptoms, didnt walk for 2 to 3 months afterwards.It was helpfull for me to write a journal of milestones to see that I was getting better. In my mind ,it seemed to slow for quick healing . I thought I already had lots of patients, but learned some more!

    • Anonymous
      October 6, 2008 at 4:57 pm

      Hi Carol, Welcome to The Family. It sounds like you need to slow down, get lots of rest and inquire about getting a loading dose of ivig. Please get more rest, you really don’t want to have a relapse from over doing things. Take Care.

    • Anonymous
      October 6, 2008 at 5:04 pm

      Thanks for your input, I am trying to rest more. I usually work about 4 hours and the rest is driving to and from a site. My husband has been a blessing and he is doing the driving.

    • Anonymous
      October 6, 2008 at 5:05 pm

      Thanks so much for your help, just having someone who understands what is happening is a blessing

    • Anonymous
      October 6, 2008 at 5:06 pm

      I am trying to go a little slower. My job invloves a lot of driving and my husband has been driving me to my facilities. I try to spend only a couple of hours a day. I manage therapy departments in nursing homes, so I usually borrow a wheelchair once I am at the facility.

    • Anonymous
      October 6, 2008 at 8:54 pm

      One of the other pieces of good advice I have heard here a lot is that rest, when possible, should be horizonal. Since you feel like your feet are swelling and worse with walking, this might help you. Can you put your feet up when your husband is driving? I also found that an hour of lying down or reclining was worth several hours of sitting. Sitting, itself seems so lazy, but lying just relaxes the muscles more and helps fluid come back from the feet. Often with GBS, the autonomic nerves are affected and so the body is not quite as good about bringing all the fluid back up from the feet. Other little suggestions might be tight hose/long socks, if you can tolerate these. get one pair of really comfortable shoes–it helped my balance to get shoes that were a little wider since I have really narrow feet. It also helped me when I started using a rolling backpack to take my papers to and from work–just a little less work for my body to do in carrying things. I now use the rollator with a seat as a transport for papers and lunch, etc.

      One final suggestion is that physical therapy “exercises” to build core strength –strength in the center of your body are supposed to help balance and walking a lot. At the recent Neuropathy Association support group we had a Yoga demonstration. It was a tiny bit discouraging how much I could not do of the Yoga–even with almost all the exercises modified for people with neuropathy, but the breathing and range of motion seemed to help. The neurologist there is a strong advocate of sitting on one of those exercise balls to help strengthen balance. She said to sit on one when watching TV or talking. I can’t say I have done this either, but I am pretty good at finding a way to get my legs level periodically in the day.

      (I am like you in having a mild case and in continuing to work full-time despite the challenges. I have learned to work a little smarter and use less physical effort).

      WithHope for a cure of these diseases

    • Anonymous
      October 7, 2008 at 11:50 am

      Thanks for your comments With Hope. I will go get support socks and see if this helps. I do agree that sitting in a car seems to make my feet swell. I am going to start doing only three days a week in the field and two office days. I do feel better when I strech out on a couch for an hour or two. I am going to my new doctor today. I switched to an internist in the same group as the neurologist that did my testing. I am hoping to get a referral to the neurlogist again so we can have better follow up.

    • Anonymous
      October 7, 2008 at 12:25 pm

      Carol, glad to see you will be seeing another Dr. It seems the first group treated everything so lightly. They should have kept you more informed on what you might experience after the diagnosis, which it sounds like you had to come up with yourself. AUGHHHHH, the medical system…so frustrating.
      As far as PT, once I started on the large ball for core exercises I did find an improvement in balance. One of my first rounds of PT was with a very caring therapist, but one who completely lacked knowledge in GBS. As I continued to re-visit the department over a period of 3 years, they began to educate themselves and changed the focus of exercise to core muscles first.
      You can purchase those goofy large balls with a CD and suggested exercise and they really do help. You just have to be faithful to it.
      Let us know what you find out with the next appointment. Good luck and better health.

    • Anonymous
      October 7, 2008 at 5:21 pm

      Hey JayDee. I went to my new family practice doctor today. He was great. He admitted he did not have alot of experience with GBS but was very clear as to our goals. I start PT Friday and my doctor has referred me back to neurologist so I can get a full work up and be under the neurologists care. My family doctor said he would keep intouch with the neurologist so that I was confident that I knew what to expect in the following months, what interventions are needed, how I respond of PT etc. He said it was great I had the support of this web site, but he wanted to make I got this same support from the neurologits and himself. Now, I am just waiting for the appointment with the neurologist. This can take up to a month, but since my doctor is in the same group practice he is personally going across the hall to try to speed things up. I joined the YMCA today and plan on swimming. I use to swim in competition in my youth, so I will enjoy this exercise. will keep you informed. God Bless all of you

    • Anonymous
      October 7, 2008 at 5:35 pm

      Carol, your doc sounds awesome. Best of luck with every thing. Glad you found us and I look forward to hearing more from YOU!

    • Anonymous
      October 7, 2008 at 7:15 pm

      Hi Carol! Welcome to the site and I hope you get well soon and start seeing improvements a little each day until you are well again! Welcome to the family here! Hugs

    • Anonymous
      October 8, 2008 at 5:30 pm

      Carol, good for you. It means so much to have a Dr. you are comfortable with. Swimming is considered a non-percusive exercise. Less stress on the joints and muscles so it should be a good mix for you. But remember, you can still overdue even with something like that.
      Good luck.

    • Anonymous
      October 9, 2008 at 11:24 pm

      Carol, just wanted to say welcome to the family, as our good friend Gene used to say “Take care, Be well’


    • Anonymous
      October 10, 2008 at 5:02 pm

      HELLO –
      I was a little slow seeing your post due to family obligations. I want to welcome you and introduce myself – we live in the same great state! All my medical help is from Oklahoma City, so I am not much use to you there. You are getting some good insight from this place on what you might expect your progress to be, keeping in mind that we are all different in some ways. I will alwayse be happy to “talk” to you.