More on my experiences

    • August 28, 2006 at 11:06 pm

      I enjoy reading about the experiences of others as it gives me a clue about what perhaps will be my own outcome in spite of the fact that GBS seems to effect everybody differently.

      I first got GBS a few days before Christmas last year. It started in my feet and caused me to walk with a limp. I went to a doctor here in Volcan who sent me to a neurologist in David. The neurologist diagnosed me with GBS and put me in the hospital where they gave me intervenous antivirus. I seemed to get better and after one week they released me. Unfortunately a few days later I started to get worst. The doctor here in Volcan put me on intervenous antivirus again here in my home. He came every day but I got worst and ended up buying a walker and wheelchair. Finally I had to be hospitalized again where they did plasmopherasis. That didn’t seem to help and I ended up on the respirator for almost two months. Finally they took me off the respirator and removed the feeding tubes and I started to eat again. The trach tube annoyed me a lot and caused lots of saliva. After two weeks they removed it and the opening healed rapidly. Finally I could talk again and it was easier to eat. At first my lips and tongue felt a bit numb and weird but finally that went away so eating food felt normal again. I hated being in the hospital and on April 5th they let me go home. I was confined to the bed and had to use pampers plus I still had the cathater. Later they lifted me into the wheelchair and pushed me to the table to eat. I had to be fed at first but later I could feed myself. Gbs really is not a very pleasant experience. I had a good physical therapist who came to the house every day. She went to school in Columbia where she got a good training. Anyhow finally she got me on my feet and I started to be able to use the walker. Later I used a cane and now I don’t use either. My hands and feet still have numbness and burning. It is worst in my feet and goes up to my calfs. My calfs are stiff after sleeping all night or after sitting quite a while. After standing or walking for a time my feet ache so I have to sit down. My feet don’t have the best sense of position so when I am driving I have to be carefull that my feet are on the clutch and brake and accelator. During the day I can glance down at my feet but at night it is more difficult. Also after about an hour of driving my right foot goes more to sleep than usual from the pressure against the gas pedal. I am able to drive the farm tractor and bush-hog the fields. In the beginning someone had to help me up in the seat of the tractor as it is quite high but now I can get up myself. I can’t squat all the way down and weed my flowers. I have to sit on a stool to do it. I can sit up from a chair but not from a completely squatting position which is very annoying. My biggest limitation is my feet which keep me from walking or standing as long as I want. My hands are better as the numbness is only in my fingers and not my wrists but my ankles are affected. I can probably walk maybe for a 1000 feet but eventually I have to sit and rest because my feet ache. My fingers don’t have the same strength to turn a wrench as before. Being in a third world country with cheap labor helps me get things done or otherwise GBS would be even more limiting to me. I am hoping that in a few more months my feet and fingers will improve. I would encourage people to write about the details of their experiences as I think it helps others who have gotten GBS more recently.

    • August 29, 2006 at 10:51 am

      My symptoms started around the first part of July 06. I am not sure what trigered it, but my son had been very sick with a nasty stomach bug for several days and I was feeling run down and sick myself although not nearly as sick as he had been. and I had also cut my toe at a local beach (it had gotten swollen and funky and I noticed that there was something still in the wound. After I got it out, my toe healed.) Both of these things happened within a couple of weeks of my symptoms starting.

      I had several bad headaches that nothing would touch—I have migraines occassionally but these were daily and my whole head was encased in pain. About that time I noticed that my toes were asleep, I blamed it on my bad posture while sitting at my computer working and told hubby I needed a new desk chair. The “buzzing” in my toes was VERY annoying and no matter what I did it wouldnt stop. Over the course of two weeks the buzzing and pain had spread up my legs to just about my knees. My hands were also involved. I had done a lot of research trying to figure out what the heck was going on with my body, convinced now that it wasnt my computer chair. The symptoms, the way it spread, the way I was feeling all led back to GBS. I was scared! Terrified is more like it!

      I was so scared that it caused anxiety attacks and I couldnt handle it any longer. I headed to the ER where I waited and waited and waited…12 hours. Was told that what I was dealing with wasnt life threatening so I would have to keep waiting. I was finally seen by a neuro who listened to my story, seemed interested and concerned, and wanted me admitted for tests. I spent two days in the hospital, my legs were so weak I couldnt walk well and the buzzing continued. I had no appetite and felt as if my insides were not working properly at this point. After a bunch of tests that included a CT scan, an MRI, a spinal tap, blood work, PT evaluation, a sonogram of my heart and the arteries in my neck…all of which were normal….I was told I was nuts and needed to seek psychiatric care and sent home.

      I was still in pain, still numb and tingling….and it had spread to my upper arms and neck and face but no one would listen since all the tests were okay….I went home very depressed and scared.

      I called that neuro again and again to get a referral to another dr that would accept my insurance (state) and that man never returned one of my calls! I couldnt get a follow up appt with anyone for another two weeks! The dr I saw was concerned and requested my records from the ER and put my on elavil (couldnt take it, made me feel even worse than I already did). By this time it had been about a month and I had stablized. I was no worse and no better. I still have not gotten in to see another neuro because of all the stuff I have had to go thru to talk to someone that will give me the time of day.

      Today, almost 2 months later now, I am healing. The tingling is not as bad most days, the pain is tolerable (much better than my dang neck and throat being weak and numb and not being able to do anything about it!! I would take the pain I deal with over that any day!), I am still weak but not nearly as bad most days. I cant drive too long or my legs fall asleep and hurt, like you squatting to work in my flower garden or to scrub the floor is almost completely undoable. I tire easily, wake up stiff (was so glad to hear you mention that you deal with this too!), it takes longer to “wake up” in the mornings so I give myself a bit extra time for that now, I can not have anything with caffeine in it or I spend the rest of the day buzzing like crazy and jumping out of my skin…too much mental or physical stimulation sends my nerves into overdrive as well so I am learning to relax and slow down. Let’s see what else, I use daily activity as PT and am learning to listen to my body and obeying the limits it sets for me. I still am dealing with my neck and throat feeling weird, my feet and legs do tingle, my face will go numb, my appetite still is poor but coming back, I still have to be careful lifting things and I noticed that when I reach out for something my hand is slow to respond on the grasping part (strange to watch it happening because I am wanting to accomplish something but my body has to catch up with my brain if htat makes sense).

      I have a new insurance and will be making an appt as soon as the card arrives. Not sure if there is anything that can be done at this point but I want someone to tell me I am not crazy and really would like to find out somehow if GBS is the culprit for sure. I am going on everything I have learned here, from reading, and from people in real life who have had it or known someone who had it at some point. Right now it is one day at a time, lots of prayers, faith, self support and rest. My hubby tells me to keep a positive attitude, concentrate on healing and not think about anything else. *sigh* it isnt exactly that easy when you are going thru you own private hell and the fear is still with you. My three kids have really kept me going and kept me sane…and so has this forum.

      My prayers are with everyone daily,
      Peace and hugs my friends

    • August 29, 2006 at 5:08 pm

      With me the neurologist did a nerve test with mild electric shocks that tested your motor nerve function. With GBS as I understand it, the motor nerves are more affected than sensatory nerves. In the test they did on me the results showed up as waves on the computer screen. Also if the motor nerves are not functioning your muscles will not respond to the shock or will respond to a reduced degree. In 20 minutes the neurologist was sure I had GBS and I live in a third world country. As a result of what happened to me later, I am sure the doctor was right. I do not understand why you can not be diagnosed after all this time.

    • August 29, 2006 at 6:56 pm

      Having to turn to the state for health insurance makes finding someone who will see me difficult. Things are looking up though and I should be able to see another doctor soon, hopefully even though it has been almost 2 months since it all started a new doctor will listen to me and order something different as far as tests go. It would be nice to know for sure that it really is GBS or if it isnt at least some sort of diagnosis other than “anxiety”.

      Has anyone else had to deal with the tightness in their neck? Drives me nuts!! But I am getting better! Slowly.