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AboveWater

906d

hi everyone! I've had a GBS diagnosis since age 6, and I wanted to know what your journeys are and what you've been told by doctors to do as someone living with an autoimmune condition. :)

    • Berwin

      704d

      It started when I was in the hospital back in may. I kept vometing and could not eat at all. I kept going to ERs to get an iv just to survive because I couldn’t eat or drink anything. I have no idea what caused it, I don’t remember much because they had me off my psych meds, but by the time I got discharged I had to use a walker because my legs were so weak. The PTs kept telling me it was normal to be weak after a long hospital stay. I knew something more was going on, but no one listened to me. Move forward to my birthday, June 16, and it got to the point I was having trouble using the walker. I fell twice that day. Once trying to get to my mom’s room to tell her something, I didn’t have a wheelchair and knew that I couldn’t use the walker at the time, so I somehow put myself into an office chair that was in the room and used my legs to try and push forward. I got all the way to the threshhold, but when I tried to cross it, I fell. I couldn’t get up and I am over 300 pounds so my family had to call 911 to lift me up. They put me into my grandmothers wheelchair, the problem was it wasn’t an actual wheelchair, it was a transfer chair (meaning it had no breaks) so when I tried to transfer from that to the bed, it came out from under me and I fell again. When we called 911 this time, my dad also called my GI who made arrangements for me to go to a different hospital where he worked. I was in there for 9 days. That was when the scariest part happened. While I was in there I kept telling them that there was something wrong with my legs. They told me the same thing the PTs told me, and also added “you need nutrition!” They said once I was able to get some nutrition in me I would be able to stand and walk normal after PT. I knew this was wrong because I felt the nerve pain and numbness. I kept telling them over and over “something is wrong. This feeling is spreading. I can’t feel my legs” but of course I COULD feel the pain so when they touched them I reacted, therefor they did not believe me. They said it was just neuropathy because I have diabetes. By the time they sent me home I could no longer stand at all. They had to send me home in an ambulance. The EMTs had to lift me from bed to stretcher, and then (because of the way my family’s house is) they had to drag me on the floor from the living room to the bedroom and then lift me again to put me into my dad’s bed. I was trapped in that bed for over a month trying to convince my family that this feeling kept spreading (it had at this point gone into my hands) and that there was something else wrong, but the docs didn’t think so and they know better, so they didn’t believe me either. Then one day (10 days ago) my mom (who had been forced to take care of me since my insurance would not pay for a rehab facility) bade an honest mistake. When PT came that day, they measured my vitals and my heartrate was upward of 130! So my mom asked if a blood pressure med (mine) would help. They said it would. So she gave me one. Flash forward and I was in an ambulance with a BP of 80/30 with the lights on. They brought me to my least favorite hospital because it’s the nearest to my house. Hospital admitted me at like 4-5 am the next day. It took them all weekend to do anything because the docs don’t come in on weekends here. Even then on Monday (after repeating many times that I needed a neurologist) they finally actually ordered one because OT saw that there was something more going on. So Tuesday finally Neurology gets here and does a physical exam. They saw my legs had no reflexes at all so they ordered a Lumbar Puncture and an MRI. The Lumbar Puncture is what found it. I still can’t stand. I’m going through plasmapheresis, and I can tell it’s helping.

    • Joy

      904d

      I diagnosed with GBS 4 years ago. My PCP recognized it right away and referred me to the ER. I was treated for months and now my only problem is that I start limping after considerably long walks

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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