Diagnosed with GBS June 5 2014

    • July 11, 2015 at 11:55 pm

      I was diagnosed with GBS on June 5th 2014. I was first diagnosed incorrectly with a vitamin B deficiency after experiencing numbness and tingling in my hands and feet and difficulty walking and balancing myself. After seeing a neurologist at the hospital he was convinced I had GBS and it was later confirmed after ruling several other options out. Within days of entering the hospital I had lost the use of my legs and within a week It had continued upwards affecting my torso and arms as well. Within a couple weeks I was paralyzed from the neck down and was having difficulty breathing and my heart was failing as well. Soon after that my one side of my face was paralyzed for a few weeks. I was given IVIG treatment but it had little to no effect. The doctors decided to give me another round of IVIG and within a week I began to get slight movements. I spent approximately a month in ICU and the cardiac ICU due to my breathing concerns and heart problems but was fortunate not to have been intibated or have to get a pacemaker. I suffered extreme pain throughout my body throughout the time in hospital with nerve pain, migraines, light sensitivity etc. I spent a month and a half in the intensive rehab in the hospital and a total of 4 months in the hospital itself. I left the hospital in a wheelchair and began physiotherapy at another location. I progressed to a walker and now am a me to use a cane around the house and for short distances. It has been a year now and am fortunate to have improved. I still have a lot of muscle pain, nerve pain, fatigue, nausea, dizziness. I have certain areas in my legs that are numb and my feet have very limited feeling other than pain. I also experienced short term memory problems and vision problems and was wondering if anyone else had these symptoms? In the end I am happy to say I lived through it and continue to thrive to improve through hard work. I feel grateful to have had such loving and caring family, friends and community that supported me and continue to do so on a daily basis. I wish everyone and their families dealing with this good luck and I hope we all can find a precise cause for GBS so we can prevent others from having to experience this syndrome. If anyone has any questions feel free to ask and keep supporting each other!
      Thank You

    • July 15, 2015 at 7:39 pm

      Hi, Jerkbrown. Yes, all your symptoms are very familiar to many of us. I know that my case sounds almost identical to yours.

      Try not to stress over the residual symptoms. I left the hospital after 4 1/2 months, on June 12, 2012. It has just been in the last 6 – 9 months that I have become more comfortable. My diaphragm has finally started to loosen so I can breathe better; my worst eye now only has occasional bouts of photo-sensitivity and looking blood red; nerve pain and muscle spasms are at last greatly reduced. Also, my teeth no longer throb on my weak side. 🙂

      While I still have some residual paralysis on my right side, I would estimate that I am at least 90% recovered. That includes my memory, speech and critical thinking issues, which are almost back to normal. The same will likely happen for you!

      Oh, and don’t you believe that hogwash about not improving after the 3 year mark! I HAVE made progress beyond that time frame and I continue to notice improvements. After a long time, plateaus can last several months and progress is more subtle but it does continue to improve.

      I still have ‘days’ but now they are fewer and farther between. Sometimes months apart. Symptoms will flare up a bit when I am especially tired.

      So, I know you’re uncomfortable right now but please don’t get discouraged. It does get better.

      Sounds like you have a terrific support system! That, in itself, is a wonderful tonic and something everyone needs during recovery. I’m sure they will celebrate your milestones as you continue to improve.

      When you’re up to it, you can try reflexology on your feet. I had a couple of sessions. Having the foot muscles massaged and stretched felt wonderful! Loosened them up, even if only temporarily. Same goes for massage therapy (only use a therapist familiar with treating GBS, they’re out there), which can make your muscles feel loosey-goosey fantastic! It can remind you of how you felt before the dreaded GBS hit.

      Anyway, hope your recovery moves quickly and smoothly! I’m certain that all your hard work will help you get there.