My GBS started in May of 2013. Couple days before coming down with GBS, my fingers on both hands and toes on both foot were numb and tingly. Several weeks before the GBS I was having some kind of upper respiratory ailment. I went to see my doctor on the day before I came down with GBS and my doctor could not tell me what I had. Next morning, I fall out of bed trying to go to the bathroom and unable to get up. I end up in the ER, and sent to take CAT scan and MRI. Had a spinal tap done and Electromyography (EMG). Test were inconclusive but I was still getting worse. By evening, I was paralyzed below the waist and very weak on the arms and shoulders. I then noticed another symptom that I never felt before, tightness around my chess as if I had a belt wrapped around my chest. I kept on telling the nurses this but no one would listen. Also kept coughing up mucus. They did a culture and found something in it. A week later I was rushed to the ICU because I complained I couldn’t breathe due to the tightness around my chest. I was intubated for 9 days. I spent about a month in the hospital moving from floor to floor, from ICU, to Acute Care to General Care.
My next destination was to a Skilled Nursing Home to recover. During my stay at the hospital and SKN, I was suffering from some serious heat flashes. I had to have ice packs placed behind my neck 24/7 and a fan blowing on me. I was still paralyzed from my neck down when I was transferred. I stayed there for another month doing PT and OT every day for 1 hour each session. By the time I left the SKN, I was able to sit up, feed myself, stand up assisted, had some functions in my hands and feet and arms.
After the SNH, it was off to a Rehab Hospital for full time PT and OT. 3 hours a day of rehab. Pool therapy was my favorite but it wore me out. My goal was to leave the Rehab Hospital walking with a cane. My stay there was about another month. Heat flashes stopped after the 2nd day. During my stay, I was walking well with a walker, feeding myself, bathing myself, clothe myself, transferring from bed to wheel chair by myself….so kinda close to being independent. I had couple of days walking with a cane, so when the day came to leave I asked the nurse if she could wheel me just before the door and let me walk out with a cane. They did and I walked out meeting my goal.
Recovered more at home. After the first week, I was walking around my house unassisted. I was driving by the 5th month and back to work by the 7th month.
I prayed every night to God for healing and he answered all of my prayers.
Hi Spencer. I am glad you are doing so well now! My son went through an almost identical process a year ago. It took forever for the hospital to figure out what was wrong with him. The ER sent us home three times in one week with different diagnoses. When they finally admitted him, they wanted to release him two days later because they did not believe he was feeling the things they were describing -- the same symptoms you are describing. They told my husband and I that they thought he was making it up, but we believed him rather than them and insisted on a second opinion. I am so glad we did that, because that doctor found proof that his vocal chords were paralyzed and he immediately suspected GBS. Within an hour of that diagnosis, Andrew suffered respiratory failure and was completely paralyzed. He could not even shut his eyes, and he looked like he'd had a stroke. I am so thankful we had insisted on him staying in the hospital until we got a second opinion. We really believe he would have died if we had taken him home when they wanted us to.
Are you willing to tell me how old you are? Andrew had just turned 18. The hospital's insistence that he was malingering was devastating for him. He was convinced nobody at the hospital was listening to him and he was terrified they were going to let him die. Then, when he could no longer speak, he got really freaked out and would not let me leave his side in case they chose to ignore him again. My husband and I were also worried about that, so I stayed with him nights in the hospital and my husband stayed during the days. We did this every day until about half way through his stay at the rehab facility, when he was finally comfortable that he was not going to die if we left him there overnight.
Since you describe a similar experience, I am wondering whether his age caused or contributed to the hospital's refusal to believe what he was telling them. Or maybe this happens to older GBS patients too, just because the condition is so rare? Either way, it sure had a serious affect on all of our trust in doctors and medical staff, most especially Andrew's.
Do you feel you have fully recovered physically? I hope so. Now, one year out, Andrew looks so much like his old self that we cannot believe he was on complete life support for so long, or that he had to learn to crawl all over again, walk, feed himself, etc. I really does seem miraculous.
Hi Spencer! So amazed at how you recovered after such a traumatic attack. My prayers were answered too as I am on the road to recovery. I am 49 and also experienced doctors not believing me especially when my scans came out normal. My lowest point was when I was unable to speak clearly. One doctor actually thought I was talking like that on purpose. He said that some words sounded clearer than others and I had too many symptoms jumping around that did not make sense. He kept saying that I was fine and needed to accept that nothing was wrong with me. It was so discouraging but I got past it and did not give up with my search for someone who would help me. I had a few amazing people that did help along the way and I am choosing to focus on that. It definitely affected my trust and I'm in the health care field myself. I wanted Andrew to know that he wasn't the only one experiencing that. It wasn't him. I feel like GBS is not understood or considered by most drs. and a lot of the symptoms are felt and not seen. Glad that Andrew is doing so well too.
Hello Tahealing,
Thanks for your post. It does make me (and I hope him) feel a little better that Andrew's age was not the only reason they ignored him. I have to say that once they finally diagnosed Andrew, most of his health care providers were really great. Not all, but most. We invited some of them to his high school graduation party -- they had never seen him standing up before.
Hi mamabear, I was 56 when I came down with GBS. The medical staff pretty much ruled out stroke due to my numbness and paralysis was symmetrical instead of being only on one side of the body. I so glad to hear that Andrew is back to his normal self again. It's been 15 months since I came down with GBS and I'm about 90%. I still got some numbness in both feet, slight weakness on my left leg, and left shoulder has developed tendonitis from overuse when my right shoulder was weak. But I'm back at work and doing well. Can't complain if you put everything into perspective on how bad my condition was just 15 months ago.
mamabear said:
Hi Spencer. I am glad you are doing so well now! My son went through an almost identical process a year ago. It took forever for the hospital to figure out what was wrong with him. The ER sent us home three times in one week with different diagnoses. When they finally admitted him, they wanted to release him two days later because they did not believe he was feeling the things they were describing -- the same symptoms you are describing. They told my husband and I that they thought he was making it up, but we believed him rather than them and insisted on a second opinion. I am so glad we did that, because that doctor found proof that his vocal chords were paralyzed and he immediately suspected GBS. Within an hour of that diagnosis, Andrew suffered respiratory failure and was completely paralyzed. He could not even shut his eyes, and he looked like he'd had a stroke. I am so thankful we had insisted on him staying in the hospital until we got a second opinion. We really believe he would have died if we had taken him home when they wanted us to.
Are you willing to tell me how old you are? Andrew had just turned 18. The hospital's insistence that he was malingering was devastating for him. He was convinced nobody at the hospital was listening to him and he was terrified they were going to let him die. Then, when he could no longer speak, he got really freaked out and would not let me leave his side in case they chose to ignore him again. My husband and I were also worried about that, so I stayed with him nights in the hospital and my husband stayed during the days. We did this every day until about half way through his stay at the rehab facility, when he was finally comfortable that he was not going to die if we left him there overnight.
Since you describe a similar experience, I am wondering whether his age caused or contributed to the hospital's refusal to believe what he was telling them. Or maybe this happens to older GBS patients too, just because the condition is so rare? Either way, it sure had a serious affect on all of our trust in doctors and medical staff, most especially Andrew's.
Do you feel you have fully recovered physically? I hope so. Now, one year out, Andrew looks so much like his old self that we cannot believe he was on complete life support for so long, or that he had to learn to crawl all over again, walk, feed himself, etc. I really does seem miraculous.