It’s been 8 years since I was stricken with this disorder. Though I have not fully recovered 100%, I’m just thankful for what God has given me back. He has strengthen my faith in him and thankful and not take my health for granted. I decided to get vaccinated and it’s been a week since my second shot. I’m in good health and upbeat to what ever life has in stored for me in my future.
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Hi Spencer, so glad to hear your faith in God has been strengthened through your illness. God is good all the time! I have had CIDP for over 5 years now, and have learned to lean on our God.
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Amen brothers, I’m on year 4 of CIDP and God has taught me so much, especially how to be compassionate to others dealing with life long illnesses. Trusting in the Lord daily (and the fellowship of some close friends) has got me through.
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Hello, everyone!
This is my first time posting since my diagnosis. I am receiving IVIG 3 times per month and it is going very well. I am 50 years old, female and in great shape. The question I have for my fellow CIDP friends is: Has the numbness subsided? With treatment, has your disease progressed?
I currently trying to enroll in a driving rehabilitation program to eventually modify my car to hand controls. This year has made it impossible to work. I am a certified teacher and guidance counselor and have been hired for the upcoming school year. This will not be possible if I cannot drive. My neurologists’
office never returns messages and I need him to refer me to the driving program to get training and modify my car. Have any of my new friends gone through this process? It would be amazing to hear from y’all.
Katie
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Hi Follygirl, I’m sure you heard this before but not all GBS or CIDP are the same. I wasn’t stricken with CIDP but instead got hit hard with GBS. I was paralyzed from my neck down. Yes, my hands were painful and numb at the same time if that makes sense. But eventually, the pain and numbness in my hands subsided. After a 3 month stay in the hospitals, my rehabilitation back to normalcy continued to progress. I too needed to be able to drive to get to work. By the 5th month after I came home, my foot and ankle gained strength and dexterity. My arms and hand were almost back to normal. One day, I decided to take a spin around the block to see how well I could drive. My reflexes were great and my movement from gas to brake was great. So by January of the following year, I was back to going to work. I pray that you too will find success in returning to normalcy. Keep fighting, never give up and God Bless.
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Thanks, Spencer. It really means a lot to hear from someone who truly knows what I am going through.
It is wonderful that you are driving and back to work. I guess I am feeling impatient and desperately want to resume a sense of normalcy. It’s every bit mental as is physical. I wish you the best!
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Hello everyone,
I was diagnosed in February 2014 with GBS and was paralyzed from the neck down. Thanks be to God that I am at 75% back to normal. I’ve returned to work part time and have been working for the past year and a half. I was contemplating getting the COVID vaccine but I’m hesitant because it was the flu vaccine that sparked my GBS disaster. So my question is do you recommend this I get the COVID vaccine?
Spencer,
I woke up from a voice that said, “Get Up!” I then came to my office and saw this email with subject line titled " Living with Polyneuropathy." I began to read your story and man what a blessing to hear encouragements and praise! It has been twenty-five years since I was diagnosed with GBS! Just like you I was stricken very fast with GBS that paralyzed me from my neck down, lost the ability to speak for three months too. What is so amazing is that no fear came over me through all of this, but the strengthening of trust and faith in the Lord. You have a testimony to let folk know of the power my friend. I go to group meetings where others aren’t so, fortunate that are still dealing with aches and pain still. This is something that I truly haven’t understood yet, how this disorder affects each person differently; but the end result is still a disorder that has taken days, months, and years out of ones life. Be strong and encouraged. Happy anniversary!!
Hi GL -
I can’t say I was completely without fear or anxiety during my stay in the hospital when I was completely paralyzed. But what I can say is that my prayers to God gave me hope which removed most of the fear in me. I had some bad days and nights as well as the good ones, more good than bad. My wife would read scriptures to me every night before she left for home. That gave me strength and hope. Every night, before I sleep, or try to sleep, I would pray the Lord’s Prayer. I can say without a doubt, that God heard and answered my prayers. Today, I may not be 100% back to normal, I would say I’m around 80%, but my recovery has been nothing but miraculous. I’m able to live a full and happy life doing my normal task. Yeah, I may not be able to go surfing as I once hoped to do in my retirement, but that’s ok. God has other plans for me.
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Hi Follygirl, I was diagnosed with CIDP in 2016, after struggling for almost two years after taking a flu vaccine. I was bad enough that my doctor told me to stop driving. That lasted for about a month, and then I was back driving. I have a Jeep with a clutch, so when I digress a little I have to be careful. Never give up! I’m always researching supplements, and have put together a daily regiment that is really helping. If your neurologist doesn’t want to work with you, find another one. I wish you the all the best! You’re not alone on this hard journey. Jack
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Hello there folks,
I was diagnosed with CIDP in 2003, and was paralyzed from the neck down, and at that time my original doctors did not know what was wrong with me. After 3 weeks at a local hospital, I was transferred to Barnes in St. Louis, where 8 doctors were looking me over, and 7 of them wanted to do a radical back surgery. I emphatically said no to that. The one remaining doctor said he felt that I had CIDP. They began a treatment of decadron, and after 2 weeks, I was able to move my left thumb a fraction of an inch. They said I was ready for rehab. Went to Mercy at Creve Coer for several months, which they had never seen anyone with CIDP. I thank the staff there for everything. They never gave up on me. Here I am 18 years later, going strong. Still, have some numbness that will never go away, and a burning sensation that happens in my right quad, which I don’t complain too much about as I fear the thought of any treatment for that could be more harmful than living with it. I have been able to live my live to the most I can, I play golf and enjoy retirement as much as I can. I may not be able to run, but why do I need to to. I will never forget laying at Barnes, on a Sunday afternoon all those years ago, a nurse from Kenya was checking on me, and said to me, God cannot help you until you get past “why me”!. I have had my struggles with several medical issues and have been near death too many times. But I am still here, still fighting. That is the most important thing, be positive and never give up.
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Hi Jack!
So sorry it took so long to respond. It’s great that you are driving successfully! It really allows you to live your life. I’ve gone through a 5 month process of training, assessment and car adaptations to finally drive now. I’m walking well but do not feel my feet. So, I’m driving with my hands. Thanks so much for input and continuing to thrive.
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Hi Follygirl, so happy to hear you are driving again! That’s awesome! Thank you for the great news!