Life With Gbs! Someone Who Can Understand

My Name is Michele.
I was diagnosed with GBS July of 2011. A spinal tap confirmed it. I was at my local hospital for a month. Suffering with sever pain and extreme weakness. After 30 days in that hospital they didn't know what to do with me. The neurologists here attempted to treat me with high doses of steroids that almost killed me. The way my body reacted to those steroids was in many ways devastating. I asked the Dr. about IVIG and his response was it/'s too risky. He was very cold and calloused toward me and only saw me 2 times in the 30 days i was hospitalized there.
They released me after 30 days ( not able to stand, and losing control of my bladder). No answers. They had no answers to my questions.
The next morning my sister took me to UAB (university of Alabama in Birmingham) They immediately admitted me, I received IVIG which, in all honesty, I couldn't tell if it helped or not.  I had  many tests including the needle and the shock tests including a nerve biopsy that was extremely painful. The results showed severe nerve damage. Dr. Brunner had said to me he didn't understand why my nerve damage was so severe. I have severe neuropathy pain I was in their Neurology department for 2 months and then received a month of Therapy in SPAIN rehab.
(The type of GBS I have was I could NOT feel my body but I could move my body. Some type of sensory perception type). when  I would lift my arm it was extremely weak like there where weighs on my arms and legs. I could not move my toes. When I would stand I could go straight to the floor. I don't know how many times I fell.
After a year, my legs are still dead.. below my knees I cant feel anything, but I'm able to walk (i look like im drunk) My balance is way off. If I close my eyes and stand, I will fall. Below my forarms to my hands are also dead. The tingling and burning is always there. THere is this strange pain in which my skin is extremely sensitive. Anything that touches my skin, it hurts. Even wind of a fan. Extreme pain. My skin will get chills from the pain. I can even feel the pain full chills on my face, or neck.  I feel these electrical shocks going down my legs that are so powerful it throw my legs out. Another thing, In m mind i think my feet are on the floor when, in fact, they are place under the chair. I've just recently began to actually type rather than chicken peck type. I can't step up on a step without holding on to something. There is a stinging sensation that is unbearable at times- In both feet.

THE PAIN IS UNBEARABLE.

I found that high doses of neurontin does help.

I have a 25 year old daughter with extreme autism. She's still in diapers, and doesn't talk. She needs care all the time. I remember in the hospital here the social worker came in and said "you're gonna have to a nursing home and your daughter will have to go to foster care." I had no one who could help me, I as lost, scared, feeling hopeless.  Out of no where my sister stepped up and said that she would take care of my daughter until I got over this. Thank God for her.
I've always been active love sports, coached 12 year old girls softball teams, I have three other daughters that I supported in sports and cheerleading. The n to have to be strong for Amanda.... I don't know.. This has brought me literally to my knees.
For example, if I go to walmart I have to use a wheelchair. Or a walker for short distances.

Can anyone relate to me, it's comforting to have someone out there who KNOWS what Im going thru here. It's scary.
I wonder about residual nerve damage. Will I ever get over this? I thought after a year i'd be better than this.
I want to add those Dr.s in Birmingham are on top of this. Very impressive bunch of Dr.s there who genuinely care.
The Drs here, literally referred my back to them, apparently they have no clue about this issue.
I went to emergency room few months ago with the pain, and I was in tears from the pain and the DR. looked at me and said "oh, it's not that bad!" Frustrating
I;m sorry this is all so all over the place, just venting I guess. No one understands this. I try so hard to explain to others what Im going thru on some days and no one really gets it.
I'm a strong woman, I've had many battles in my life and overcome, but never anything dealing with my health.
lying there at UAB neurology for those 2 months, I had strange people changing my diaper, giving me baths..At first i hated it and dreaded it, but after a while I said "to hell with it."
Now, I see the people in my life so differently. I've attempted to mend those wounds I may have caused to the ones I hold close to my heart. I see life in a different light. Amazing how it changed my mentality in how I saw or see things. Even little things in my life I can adore and appreciate.
but it took me to get to the bottom to just LET GO. I'm stubborn like that. But God works in perfection. Only God knew what it would take to give me that break I desperately needed for so long from all the pain and struggle in my life, it took my health to break in order to get it. Yes, It's a bizarre way of seeing thjs illness in that way, but I''m telling you, God works in perfection.

MIchele
MitziHernandez MitziHernandez
41-45, F
3 Responses Aug 18, 2012

<p>I can relate to your problems also. It has now been 10 months since I was diagnosed with GBS. I had a lot of pain and still do have some, but not as bad a s yours. I would feel like my legs and feet were in positions that they were not. It was very frustrating. One of my nurses suggested that I ask my doctor for something to help the tingling and stinging pain in my hands. He prescribed neurontin and said that it might help. It slowly began to subside somewhat. I thought for a long time, that neurontin was something to help GBS and then I found out that it is for pain. Whatever! I still take 3, 300mg tabs a day and my hands are so much better. My lower legs and feet are another story. I was told that your healing goes in reverse from the way the GBS starts and mine started in my feet and came up. My healing has defintely started from my nose, taste buds, hands, arms and on down. Hopefully some day the feet will heal. Even though I still have the numbness and tingling I am walking, Praise the Lord. I too look like a drunk when I walk and have to be so very careful not to fall. I use a cane when out in the open to help with balance. If I close my eyes while standing up, I tend to lose my balance. Mercy, there is so much to be said about GBS and my family doctor did not know what was wrong and did not refer me to anyone else. He has since told me that they studied about it in med school, but that he had only seen one other person with GBS and had no idea what was wrong with me. I also have had colostomy surgery in the middle of all this and that in itself is a life changing experience, but hey I am still here and dealing with it. I am retired, however, and do not have to worry about working a job or young children at home. My husband is a jewel and has been so very supportive and helpful even though he himself has previously had 3 light strokes and 3 hernia surgeries. But we are making it together and God and Life are so good!! Hope this has helped a little.</p>

Michele
I can relate to your problems. I have had more luck than you with the medical profession. By the time I was diagnosed I was paralysed from the waste down and within 1/2 hour of dying but I was diagnosed in 10 min by a wonderful set of neulogists in Kamloops BC hospital. Within a 1/2 hour I was in intensive care and the IVIG transfussions were ordered. I have had 14 transfussions and within a week I was up in a wheelchair and using a walker a few days later. One month after diagnosis I was home taking care of myself mostly. I also am a very strong woman, I am a Fetal Alchohol Specialist, Cranio Sacral Therapist and Healing Touch Therapist. Today I have been out of the hospital 2 weeks. I hate looking around my house and seeing all the work that needs to be done that I can't do. I hate going to Rehab to be told that perhaps I will be walking on my own in a year. I need to make some money to survive, My pain is not as bad as yours. It definitly was but I thank the docs for the quick diagnosis and treatment that saved my life.

I read your GBS story, and i have never heard of the symptoms you had...<br />
the no feeling, but movement.<br />
I did have the severe tactile pain...excruciating...<br />
like someone had beat my whole body with a ba<x>seball bat.<br />
I felt Anger, when you<br />
write about docs who<br />
so arrogantly dismiss pain, terror, and <br />
the devastation of GBS....to this day,<br />
i have significant difficulties with trauma response<br />
when need to be a patient...<br />
full of fear, askewed perceptions,<br />
hyper startle response....etc<br />
anyways...<br />
do the best you can to mourn the you and all you've lost,<br />
surrender to the verrry slow subtle healing processes,<br />
physical, emotional, and spiritual,<br />
we are holistic beings....all parts<br />
working harmoniously together<br />
as well as each dimension effected<br />
by the others...<br />
be especially kind, patient, and forgiving to self,<br />
you need that...<br />
hoping you findjoyinthejourney, clg