Reply To: Effects of GBS over 2 years later

My first time posting, that I remember. I came down with GBS in late November after Thanksgiving 2013. I was was sent home from ER several time and when my dr at a clinic came back after Christmas vacation, on Dec 27th; he immediately called St. Joesephs hospital to tell them I was on my way. Went inpatient with inability to ambulate and some weakness all over. Spinal tap and EMG and rounds of IVIGs and steroids, I was sent home a week later. I had to wait 21 days for my neurologist follow up. My husband called the hospital and dr’s office everyday to see if I could come in earlier. I kept getting worse. I have a brand new walker I had to buy, because insurance didn’t pay. It’s still brand new. The last time I stood up was leaning on the wall on Christmas night; all I could do to have a normal Christmas. My husband (he went blind in 2012) carried me to my daughters car and made it to my appointment, which at that time I had gone completely paralyzed except for my head. I worked out almost everyday since I was 20 until that day, at 56 years old. I didn’t smoke or drink alcohol; not even over the counter medication. No meat, mostly vegetarian, some poultry, and very regular normal living, except my excellent physical condition. I was actually working on my six pack at the time. I won North America Woman’s Body Building Championship, the title, at 40 years old. I competed until I was around 44; and then was too busy with my daughter to devote that much time. So, because I was so healthy, was probably the reason I never lost the ability to breath, or shutting down of any other organs. I got home from the hospital in February. And six months later, I had 3/4ths of my thighs come back to life; thank the Lord. No more commode, I could slide on a wheel chair to the bathroom. my fingers can type; not all of them, but my face doesn’t fall in my cereal bowl anymore! I can’t sit up too long, or I’ll end up sleeping for and a half. I don’t even like to sleep; I don’t want to waste my time here on earth sleeping it away. My long distant friends have stayed. My close in proximity family had to distance themselves from me. That was a huge change i had to deal with. They couldn’t handle the amount of help I need I think. i probably come off too needy to those close to me, but I try to be like the hero else where. So, I’m pretty sure it was my fault. It’s okay. I have my husband, my daughter and our grandchild; two years old, adorable.

I’ve never stood up or walked again. I have all different pains, mostly in hands, forearms, biceps shoulders, calves, and toes. Miserable constant pain in fingers, like being run over by a car tire, and never wakes up, and inner pain, muscles cramps, like curling up like the wicked witch of the west. But I have a mediocre cocktail that this team of neurologists put together, at the Barrow Institute and I have never had my doses titrate up. Probably body not able to form a tolerance. That’s one good thing. I had three EMG’s and the last one this year showed no progress since 2014, so my neurologist took me off of my IVIGs because after 4 years he figured it wasn’t doing anything for me; but making me look like a pin cushion. But, sometimes I have PCP’s change my meds to lower the pain meds, and it throws everything off. It takes a couple weeks to get a tolerable amount of pain back in order. I keep my mind very busy. I learned how to make websites; and have fun with making graphics on computer and make post card stuff. Haven’t made any money yet, but you never know..lol.

I think the antidepressent I take (never had I taken any medication prior to GBS for this), it works well; it keeps me awake too, because the lyrica is strong and without the effexor, I fall out like a narcoleptic. I haven’t weighed myself since 2013, but I’m pretty sure I still weigh around 105; the antidepressents did not make me gain weight. My legs have shrunk up so much, they feel very light. Just recently, well after the ordeal with running out of my meds, I lost hearing in my left ear. I do have neuritis behind my right eye since the GBS. Now this left ear is driving me nuts; it sounds like a computer fan in my ear. This is a long post, so sorry. But, I will continue to try and love my family and life while I’m still here. I thank the Lord for all of his blessings as I am able to still breathe and feel alive, even in this bed I call my “wheel-house.” I dream of better days of course, but i love my family, and I’m glad I’m alive and with them.