GBS x2 in Alabama – my first forum

This is my first forum, ever, and I don’t know the rules but I do have questions concerning GBS.  I apologize for the length of this up front.  But when you are discussing 2 cases of GBS, it takes a little space.  Thanks.

I have been reading several stories and have learned that I am very fortunate in my recovery.

I am recovering from my 2nd bout with GBS.  My first case was in September 2009.  I think the trigger for me was VERY serious stress. I had not been sick at all that I remember.  I had “words” with a family member.  During the dispute, I broke out with a rash around my waist.  I noticed later in the day that I had tingling in my toes and wasn’t walking quite right.  I went to my PCP a couple days later because I really thought I had the shingles rash.  The Dr. said it wasn’t because it crossed the center of my body.  He watched my walk and noticed it was off “somewhat”.  He scheduled an MRI for 2 weeks later and then return to see him.  During these 2 weeks my gait got worse.  I was already seeing a Chiropractor so I decided it was probably something he could correct.  On my 3rd visit, I was had to hold or lean on the walls to walk.  At this point I wasn’t in any pain, just the tingling in my feet which had gotten worse.  On this visit, the Chiro.  told me he could not touch me again until I had an MRI.  He was very concerned and sent me immediately to have an MRI.  I had not called my PCP because I really thought this had something to do with my spine or body being out of adjustment and was waiting for my scheduled appointment with PCP.  When the Chiropractor looked at the MRI results there was disc issues but nothing he thought would cause what I was experiencing.  This was Friday afternoon on Labor Day weekend.  I still had NO idea I was that sick, so I went home to wait until Tuesday to call my PCP.  OH, what a bad idea.  That night when I got up, I fell and could not get myself back up.  After 3 falls, my husband would walk behind me holding my up.  Tingling and weakness had begun in my hands and arms.  I also began having pain that reminded me of Restless Leg Syndrome.  I would not go to the ER because I didn’t feel this was life threatening.

I went to my PCP on Tuesday, in a wheelchair.  When he saw me he knew at once what it probably was.  I had no grip in my hands, could not stand without support and no reflexes. He called a Neuro and the hospital to be admitted immediately.  I was in the hospital for 1 week and received 5 days of immunogoblin treatments.  He cautioned me and the nurses that if I experienced difficulty breathing or swallowing they were to call ICU at once.  I was on a heart monitor and they kept close watch on me.  I had more MRIs and a lumbar puncture to verify GBS.  On the 3rd day of treatment, I began to respond. After 5 treatments, I was transferred to the physical therapy floor for about 2 weeks.  I responded well to therapy and was on a walker when I left the hospital.  After a week of outpatient therapy, I went to a cane. After 6 weeks of therapy, I was walking on my own.  I still had some tingling in my feet which lasted a few months.  For the most part, I fully recovered.

NEVER thinking it would happen again…November 27 I began having tingling in my feet and my gait was very unstable.  I had been having sciatic nerve pain in my right leg for a few weeks.  This was caused from my L4-L5 to L5-S1 disc bulging.  I was scheduled for a pain block on November 27 and went ahead to have it.  I shared with the pain doctor what I was experiencing and that I had had GBS 3 years before.  (I should have realized they really don’t have any idea what that is.)  He said I would be fine.  During the night, after the pain block, I fell 2 times.  Of course there was NO question what was going on then.  My husband got the walker for me.  I called my PCP and told them I wasn’t able to walk without assistance. I didn’t want to go to the ER because everyone had the flu and I knew I didn’t need to be there.   I really don’t think my PCP believed me when I called and asked to come in because I had GBS again.  I think he thought it had something to do with my disc problem.   Anyway when he saw me, he immediately called the Neuro and the hospital to be admitted.  I am so thankful for my PCP because he takes action and pushes to get all the test that are needed started.  I had 3 MRIs and a CT scan that evening.  I started immunogoblin treatments the next afternoon before the results were back from the lumbar puncture.  This time was harder for me. I could not walk with any support and my hands and fingers were curled down.  I was still fortunate that I did not have any breathing issues.  I did have extreme pain in the middle of my back. 

After 6 days, I as put on the rehab floor for 2 2/1 weeks of therapy.  I went home on Dec. 22.  I had not recovered my balance this time.  At least I could get around with a walker.  After a couple of weeks I was able to use a cane in the house.  I only use the cane when I go out.  I still have not recovered my full balance.  I have a lot of internal shaking this time.  It feels like my arms and feet are jerking, but they are not.  Once again, I am very thankful because I really do know I am fortunate for the recovery I have.

If anyone has had the “shakes” and nervousness I would like to hear about it.  This has been a real issue with me.  Also, sometimes I have a strange smell in my nostrils.  This is not an odor in the air, just up in my nose.  Of course, my PCP just looked at me confused.  I don’t think he thinks the nervousness had anything to do with GBS.  I think it does!

Thanks for listening and sharing.

JuJuBug