My name is Mitzi. I was diagnosed july 1 2011. I was hospitalized 4 months. A month in my local hospital and 3 months in University of Alabama at Birmingham. They said I have an Acute Guillain Barr'e with Painful Neuropathy. The nerve biopsy revealed "severe nerve damage." Dr. Brunner said he didn't understand why the damage was so "prevalent." When I was first hospitalized the Nero here put me on an IV of steroids for seven days. It almost killed me. Literally.
When I got to UAB they treated me with IVIG, but I saw no improvement. I had a form of GBS where I wasn't paralyzed, I could move my limbs but they were heavy. As if heavy weights where on them- I could not control my hands, i had hand drop. The pain was/is unbearable. If someone or something touched my body it felt like a sledghammer hitting me but at the same time, my body was completely dead- strange. I lost control of my bladder for a while. I had problems breathing but never had to succumb to a ventilator. I could not sit up, or stand without falling to the floor, no strength at all. I was in SPAIN rehab for a month. I've been home for 9 months now, I have managed to finally walk around the house without a walker. My balance is a problem, and I get disoriented. For example, If I stand and close my eyes I WILL fall. If I go out (which is rare) I have to have the wheelchair, or walker depending the walking distance. Steps are still a huge issue.
I have a lot of pain. I struggle with this so much, it's wearing me down. I have no insurance and at this point and time I'm trying to renew my "charity works" at AUB who will cover my expenses. It's been expired since June and I'm struggling afford the medications that I need to cope with the pain. There is a "mercy clinic" here that will provide my meds but it takes time to order the meds. The DRs there have no clue about this disorder. I had to tell them how to spell it, for example.
I know my family is sick and tired of me complaining about my pain and my feeling so tired all the time. No one understands just what this illness is doing to me. They try but they don't get it. It's frustrating. Some days I just cry with this. I'm sick and tired of being sick and tired.
I have questions like is this nerve damage permanent- will my nerves eventually heal. Will I ever feel my legs and hands again. Is this what I'm left with- Is this the residual effect from the nerve damage- As I was in the hospital the Neros told me it would be ok, in six months id be over this... REALLY? I don't think so. I was told this as I had been in the hospital four months. Is the 4 months I was bed ridden included with the 6 months are what... doesn't make sense. Does anyone know anything with absolute certainty about this illness-
I still can't feel my legs from the knees down. They are dead. I feel the pressure on the floor that's how I manage to walk. The dead legs is what (i think) disorients me, and keeps my balance off. The pain- the burning, stinging, the electrical shocks that are so painful it throw my legs outward. In my local hospital when I was suffering all the pain, I was told I shouldn't be feeling all of that pain. I was so frustrated with them I cried- My hands are numbs. When the pain gets so bad it gets into my skin- even the wind of the fan on my skin is painful. So painful my face and neck gets the chills.
Im sorry if I sound so negative in this message. I think it's more frustration and feeling hopeless than anything. I need others who I can relate too. I desperately need that connection with others who can understand and relate to me and this sickness.