my story thus far

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
Lori