Six months of GBS a history and update

    • Anonymous
      July 14, 2010 at 7:02 am

      Six month ago today, I was diagnosed with GBS and admitted to the hospital. It was 5 weeks after knee surgery and I had received 3 CAT Scans, and three MRIs and had no Idea why I was slowly becoming paralyzed. It was a relief, for both my wife (Mary Beth) (MB) and I when we found a neurologist who knew immediately what I had. He admitted and rolled me right then and there to the hospital for tests to confirm his diagnosis. That morning I had a lumbar puncture and that afternoon an EMG. GBS was confirmed and IVIG started that night. My doctor assured me that I would get better after treatment. I assumed that he meant that after the 5 days of IVIG I would be cured and symptom free. I knew nothing. All I knew was I could not feel anything at all from head to foot , my face was numb, I had a strange sense of taste, had the feeling of bugs crawling in my nose and my hand felt like they were on fire and also had strong pain on my back.
      We asked the nurse what GBS was; she told us that Guillian Barre ( she pronounced it as it looks) and said that it somehow effected the nerves (she knew nothing). MB called our son, borrowed his laptop, and looked up GBS on the web. That first night IVIG was started, seemed routine and no info was given. By 10 o’clock I had chills and could not stop shivering, at midnight I was extremely hot. I needed to call for the nurse every hour or so to get help to go to the bathroom, I could stand but not move my feet without assistance. I finally asked for sleep medication and by 2 am was sleeping till 2:15 when I was awakened to breathe into a tube to measure lung capacity. I wasn’t told that breathing could be affected until the next day. Day 2 brought no change I expected to start feeling better but things were still getting worse. Info from the web (thanks to the GBS/CDIP site) came in and I was beginning to really get scared and confused. I tried to remain brave and put on my strong manly face. Day 4, still not better and this day depression set in, the manly face was gone and I cried when I realized I would not be all better at the end of the 5 days of IVIG. PT and OT were not agreeing on how I could go home. Ot wanted a nursing home I wanted to go home and left on day six with a walker from the wheelchair to the car. At this time the doctor stated I would be better in 3 weeks and foolishly, I believed him. I called my boss at work and told him I would be back to work in three weeks, this was another foolish mistake on my part.
      Moved from the walker to a cane in about 3 weeks and could also drive (not sure how safely) to PT appointment, still quite numb in hands, legs, feet and back.
      At six weeks I returned to work for two hours per day and gradually increased to 3 the 4 hours. Slowly, strength was returning but still tired easily. I am currently working 4 hours in the morning, come home for two hour rest and go back to work for 2 more hours (people at work have be extremely good and understanding). At night I can cook supper and then relax until bedtime. One of my major concerns is that most people do not understand what is happening to me, I look good and they expect me to just shape up and get over it. To these people I give the Bronx cheer, to my understanding friends I thank them for their support and the help that they have given us.
      To help celebrate 6 months, this Saturday we are flying from Milwaukee to Hilton Head for a week on the beach with my daughter and her family. I am hoping that I can get to the beach daily and play with my granddaughter and rest in the afternoon and then play some more. This trip is a little scary but with support of MB and others I am anticipating a fun time. Looking back, my health and endurance have improved and I am grateful that I am experiencing this improvement. I am still weak, numb and tired and seemed to have reached a healing plateau. I would like to thank all the people here on the forum for your support, understanding and knowledge. I wish you all improvement and will let you know how the vacation turned out.
      Six months down a lifetime to go

    • July 14, 2010 at 7:31 am

      Enjoy and heal!

    • Anonymous
      July 14, 2010 at 10:37 am

      Harry, hope you have a great vacation! GBS is no fun that is for sure. Look at how far you have come! 🙂

    • Anonymous
      July 15, 2010 at 12:19 am

      You, Jessica and I are all about at the same time on the calender – my hospitalization was 12/25 – what a Christmas gift! I will be going back to work Aug. 4th when the school year starts, and pray I can make it through the day.

      Enjoy your vacation – the sun, the beach, the daughter and a glass of wine with the evening sunsets. I’ll be thinking of you!

    • Anonymous
      July 16, 2010 at 11:22 am

      Hope you have a grand vacation. Glad you get to enjoy family together.
      Pat. G

    • Anonymous
      July 17, 2010 at 6:58 pm

      Harry, it’s been 6 months for you and you say you seem to have reached a healing plateau. I can tell you that after 2 3/4 years of GBS, there are more healing plateaux to come. I think the body heals to its capacity and then there seems to be no perceptable progress, but it’s still taking place. All of the damaged fibers, and neurons are actually still healing, but will take more time to connect so that improvements are noticed.

      I’ve had at least 5 plateaus since this happened to me in Nov.2007 following my flu shot. The onset symptoms were slow but terrible, but then I “stabilized” after about 6 weeks of the worst ones. That just means I wasn’t getting any worse; I was crippled, couldn’t walk without aid, in constant pain, and dealing with stroke symptoms. But the GBS hadn’t killed me. Plateau #1.
      After that point, it seemed like no healing was happening, and I was always struggling with constant pain, spasms, contractions, crippled body and stroke symptoms. That went on for about 6-8 more months, then subsided somewhat, so that was Plateau #2.
      Then the constant headache and dizziness and muscle weakness in my face began to subside too, and I gained back some muscle control. That took about another 6 – 12 months. Plateau #3.
      Then the arm co-ordination gradually improved, though I still have tingling, spasms and painful contractions to this day, some insensitivity to hot or cold, dropping things. But I can function better picking up things, writing, holding things, etc. Plateau #4.
      Some of the foot-drop is lessening, though I still can’t trust my balance, and my strength and endurance in my back and legs is minimal, and I need to walk with a rollator or cane.
      But it’s improving, as long as I don’t over-do. I can walk in the house without touching walls for support, and can stand or move around a little indoors and outdoors without my cane. Plateau #5.

      Lately, I haven’t been on the internet much. For the first 2 1/2 years of this, I was on the internet a lot, re-programming my brain with reading, typing, spelling, interacting with others, etc. It was a tremendous help to re-connect some of the mess of the neuron damage in my brain. But for the past few months, I’ve had more of a sense of wanting to do things again. Motivation is coming back to do my housework, gardening, household projects, stuff that has piled up throught this long illness. Up to this point, my mind was too foggy and exhausted most of the time to do anything but force my body to accomplish the most essential tasks of daily living and working. I lost a lot of ground in the past 2 3/4 yrs. And I couldn’t force my brain to do more than that. But nowadays, I sense another portion of healing is happening to me–the ability to recover my will, motivation and determination to do things that I fell behind on. I’ve been simplifying and down-sizing this summer, so I can handle my ‘new normal’. And some of the ‘old me’ is starting to come back again to enable the ‘new me’. A slow process.

      I write all this to encourage you that there is still more healing to come, and I believe it will come for you too. Just keep on taking good care of yourself, and be patient with the time-frame of your own healing process. I guess the healing process of GBS could be compared to mountain-climbing. A grim struggle to reach each goal, then it seems like we’re not progressing, but actually we are until we reach another level, and in time another one. And as time goes by, we can look back and chart the progress of our journey.
      So there’s hope; and I thank God for programming the human body with its tremendous capacity to survive and recover from illness and damage, and to heal.

      All the best on your vacation, and when you’re resting on the beach in the sun, watch out for sunburn. 🙂