Please, allow me to share my story.
I have been affected by GBS for 13years now. I was 13, back in 2001 when GBS struck. I was having fever, backache and neck pain of five days prior to presentation at the hospital. On examination, neck stiffness, diffuse abdominal tenderness and tenderness along the vertebral column thoracic region were present. I was still fully conscious, well oriented and was able to walk during that period. Three days after, I woke up in the morning with a painful shivering feeling and loss of sensation in my foot. I tried to get up for morning devotion but fell. My condition worsen within a few hours to the point that I suffered incontinence and loss of touch and sensation from the nipple down. My family doctor reffered me to a government owned teaching hospital where GBS was diagnosed.
But unfortunately for me, I have been very unlucky with medical care. Information were scanty about GBS then. Doctors were clueless about the treatment for my condition, no physician ever suggested all the treatments I am reading on here. I was only moved to a physiotherapist. These hospitals later went on strike which lasted 3 weeks during the same period that i was diagnosed of GBS, (I’m from West Africa). I was at the physiotherapist for more than 6 months with no improvement. I was latter brought back home and confined to my bedroom.
I have a lot of story yet to tell, but To cut story short, it’s been 13 years of unimaginable internal and emotional pain. I’m still in the same condition; paralyzed from the nipple down and have never recieve the right treatment till date.
Now after many years, I’m just getting firsthand info about a condition many of my relatives have termed a spiritual attack and sorts (This is Africa), and have subjected me to many displeasing religious rituals. I’m learning about IVIG and Plasma exchange for the first time by searching online. There seems to be no possibility of comfort. I’m going to show the info I got here to a physician.
Got a somewhat hopeless question: is it worthwhile to try these treatments after several years of the illness?
I am so sorry that you have been enduring this suffering.
Thank you for reaching out. Please indicate what area you reside in Africa, so as we may provide information for you to receive assistance locally.
Tamara
Any hope is hope! Don't give up. Get these treatments and give it a try! What have you got to lose in trying? Please keep me informed on your progress. I am so sorry about what you have gone through.
I was diagnosed with GBS in December 2013 , and as soon as I was admitted to the hospital and diagnosed I was given infusions of IVIG for five days in a row. I was paralyzed from the waist down and was in the hospital for a month, I also had very intense physical therapy, but when I left I was able to walk with a walker, but still needed a wheelchair. I had a relapse 4 weeks later, went to my neurologist and was diagnosed with CIDP, chronic, inflammatory, demilenating , polyneuropathy. I'mean now receiving IVIG once a month and it has made such a difference. I am so much stronger that I hardly use the wheelchair anymore. I was fitted for braces and can walk good with a cane. I live in Rochester, N.Y and have access to the best health care, but as far as the IVIG, I would give it a try. Nothing ventured, nothing gained, right ? Good luck to you and Faith in The Lord is the cure !!!
Thank you all I appreciate your contributions. I spoke to a consultant neurosurgeon on thursday who requested for my MRI scan of the thoracic spine. I’m waiting for the result. Please, what specialist is in the best position to discuss my GBS treatment with?
Well, I think it would definitely be worthwhile to try some of the treatments - what do you have to lose. You really have endured a lot. If you typed this - you have feeling in your hands. Blessings to you and keep trying to find medical facilities that will help you with your Guillian Barre symptoms.
I am sorry to hear the pain you have endured. I hope your condition will improve over time. My daughter was admitted to the neurology department with a daily consultation from the Neurologist for the week she was in the hospital. Pray for you, be strong.
I was diagnosed with GBS in December 2013 , and as soon as I was admitted to the hospital and diagnosed I was given infusions of IVIG for five days in a row. I was paralyzed from the waist down and was in the hospital for a month, I also had very intense physical therapy, but when I left I was able to walk with a walker, but still needed a wheelchair. I had a relapse 4 weeks later, went to my neurologist and was diagnosed with CIDP, chronic, inflammatory, demilenating , polyneuropathy. I'mean now receiving IVIG once a month and it has made such a difference. I am so much stronger that I hardly use the wheelchair anymore. I was fitted for braces and can walk good with a cane. I live in Rochester, N.Y and have access to the best health care, but as far as the IVIG, I would give it a try. Nothing ventured, nothing gained, right ? Good luck to you and Faith in The Lord is the cure !!!
Hi, i was diagnosed with GBS in Nov 2012 and never received IVIG as they said it was too late by the time it was diagnosed - 5 months later. I am also left with CIDP and am in constant severe pain with weakness predominantly on the left side. Though I walk and try to carry on a normal life, the pain becomes excruciating especially when I walk, lie or sit. Drugs do not help except to 'remove' one from the world. I take painkillers at night in order to sleep. I was told that having IVIG now would not help as it is too late. What other help is there out there for CIDP?
Well, I think it would definitely be worthwhile to try some of the treatments - what do you have to lose. You really have endured a lot. If you typed this - you have feeling in your hands. Blessings to you and keep trying to find medical facilities that will help you with your Guillian Barre symptoms.
Nebretta
My hands are not affected. I sit up on wheelchair, cook, and do household chores like laundry and cleaning on my own, and without struggles. The main obstacles is that, my condition is kept private. I'm being kept indoors and have access to only family and few friends who are 'graciously stubborn'. A typical example of what happens in some african communities. It is one ot the event that brings dishonor upon family and causes them to feel embarrassed. Thus making it difficult to continue my education and getingt on with life. I still don't know how best to fight this off.
I hope have helped someone out there to,,, Be Thankful!
You definitely have some obstacles as far as getting medical help that might get you walking better. I hope you are able to continue your education in the near future so you can carry on with your life - to be the best you can be.