Becoming Paralyzed Was Terrifying, Humbling, Expensive & Life Changing! by iot-corp

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· @iot-corp · (edited)
$13.01
Becoming Paralyzed Was Terrifying, Humbling, Expensive & Life Changing!
![GBSsurvivoreFBcoverSize.png](https://steemitimages.com/DQmRJHQNn4LB3C2yS9gueAYR8cDzCTnYpQUtPn5z5T7Wavg/GBSsurvivoreFBcoverSize.png)May 2015, my life changed forever, on Mother’s Day, my feet began experiencing what is best described as the pains of hell. No foot rub in the world could have soothed that pain. I had been off work due to flu-like symptoms for several weeks. On May 13’th I returned to my executive job at Sprint Corp and my feet were still in awful pain without any relief. Then in a bizarre twist as I sat in my office my feet suddenly became completely numb. The pain was gone which was a relief but when I stood up and started walking my feet felt like concrete blocks. Walking was instantly difficult. I had no idea what was going on but it was alarming. 

I scheduled an appointment with my primary physician right away. He is an OT and was puzzled as he poked my feet with a sharp object and I could feel nothing. This is the point where he should have sent me to the ER. He took blood tests that took a week to get results. He told me to stop taking a new medication which I hoped would make a difference. Unfortunately, it made no difference and the paralysis began its ascent up my legs. After a week, the blood test results were back and they were inconclusive.

I sought the opinion of another Doctor, who said I needed to make an appointment with a Neurologist. In addition to the efforts of the Doctor’s office to make a Neurologist appointment for me, I also called every Neurologist I could find contact information for. The harsh reality was that the Neurologists were all booked out at least 2 months. This is another milestone where one of the Doctor’s should have sent me to the ER. We really must take control of our healthcare and not ever wait on any medical professional who doesn’t have a clue as to what is going on.

After already taking a month off previously I continued going to work because I wanted to keep my job. Fast forward to the first Monday in June.  Several members of upper management were coming into town for meetings and I had just been promoted. I had every intention of being there, but when I got out of bed I fell to the floor as I tried to stand up. Almost overnight the paralysis had climbed up my legs and to my waist. Now I became panicked yet still waited for an appointment with a Neurologist.  

I was totally out of it but finally got to an emergency room, where I was instantly assigned a Neurologist. For the next few weeks, I spent every day getting every possible test you could imagine. I also spent more than 8 hours in MRI machines. After all the blood tests the Neurologist gave me two tests that helped him to finally diagnose me. The second to last test was an electromyogram (EMG), which is a test that is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. The conclusion of the test was that my nerves weren’t communicating with the muscles. 

The final test leading to a diagnosis was a spinal tap. By that time, I had no feelings in my body and had become a quadriplegic. As if a spinal tap doesn’t sound bad enough, I had 2 different radiologists trying to get spinal fluid with no success. They used 10 different needles and I could definitely feel the needless jabbing my spine. Finally, they could get the fluid which the Neurologist tested. What he found was a high level of protein in my spinal fluid aka Cerebrospinal fluid (CSF). Within a few hours, I was rushed to another hospital to receive immunoglobulin infusions. IVIG is essentially a small solution composed of positive antibodies from thousands of plasma donors. 

I had no idea what the diagnosis was when I arrived at the new hospital. One of the Doctors on staff informed me my diagnosis was Guillain-Barre Syndrome. GBS is an autoimmune condition that is like Multiple Sclerosis. With GBS the immune system attacks the nervous system and begins pounding away at the myelin sheath which acts as insulation around the nerves so the nerves, muscles, and brain can communicate. By the time I began receiving the IVIG infusions my chest was tight and breathing was more labored. If it had gone another day I would have needed to be put on a ventilator/life support. For 5 days and approximately 5 hours per day, I received the IVIG infusions. On top of all the other expenses leading up to this, the cost the IVIG and nurses who administered it was $30,000 alone. 

After receiving the IVIG I literally slept for weeks as the positive antibodies worked to stop the immune system from attacking the nerves. The immunoglobulin also helped to start repairing the nerves. The only way I could get around was on an electric wheelchair. About 1 month later I could move enough to begin 37 sessions of physical and occupational therapy. I had to learn how to do everything again including writing, typing, feeding myself, tying my shoes, buttoning my shirt, walking again and much more. GBS always starts with the feet and ascends to the top of the head. Some patients are paralyzed head to toe in 24 hours. About 5% of patients die because they don’t get to the hospital in time. As I began to improve I started to have more feeling in my upper extremities. So, I had some hope that I could have a good recovery. 

In the end, I have made a good recovery, although my feet are in constant pain and I still have balance issues. I am grateful I made it through although the medical bills have continued piling up. My world has changed in every way. My family is closer, I am happier and so grateful for my physical abilities.

I didn’t return to Sprint which meant my finances have never been the same. I do random things to make money and spend a lot of time volunteering for the GBS CIDP Foundation International as the Liaison for Utah. I visit patients, organize meetings and have a new passion in life of raising awareness at every level. Based on my experiences I now work for the hope of helping other patients get an earlier diagnosis than I did. I have a much deeper understanding of what it means to have empathy. Empathy can change lives for the better.  Thanks for your time! I follow everyone who follows me. Feel free to leave any comments below and have a great day!
![oli.jpg](https://steemitimages.com/DQmVA6DmkEwYXXhimEUmxHunTDC9tUZbCKqBfCRjYcaQPFF/oli.jpg)
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@lulita ·
Welcome to Steemit! I hope you like it as much as I do. Very inspirational your story, and everything you are doing now. 
I'm following you to know you better. Feel free to connect with me 😀
👍  
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@iot-corp ·
Thank you, lulita! I am following you as well!  I appreciate your time reading my story. I have much more to share!
👍  ,
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@lulita ·
It was a pleasure reading it. Keep sharing!
👍  
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@ericarthurblair ·
Very touching post. People often do not appreciate what they have until it is gone. I am glad you are recovering. I am glad you turned this into a positive and give back by volunteering your time.
👍  
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@iot-corp ·
That is very true that people don't appreciate what they have until it is gone. Thanks for your time reading my story!
👍  
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@my-name-in-vein ·
Ouch - I emphasize with you there. I know from having done them, that difficult spinal taps are quite excruciating for the patient.
👍  
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@iot-corp ·
Yes, the spinal tap was very unpleasant.
👍  
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@indepthstory ·
Hope the best in this new & challenging environment. I like writing/posting about several topics that call my attention, from travel, life to science and technology. Here are some of my last posts, that if you can, read them and leave some comments - it will be great.

https://steemit.com/life/@indepthstory/nice-island-beautiful-beach-lots-of-aquatic-sports-to-do-still-the-best-part-of-the-trip-was-been-in-family-all-together

https://steemit.com/steemit/@indepthstory/i-was-almost-convinced-but-what-happened-what-on-earth-is-going-on

https://steemit.com/life/@indepthstory/rio-de-janeiro-is-one-of-those-items-that-must-be-placed-in-the-bucket-list-and-one-day-definitively-visit-we-did

Best of good luck in the STEEMIT arena  ….  have given you my upvote & follow tick for the welcome, and of course hope you will follow me .!!

Txs. & Rgds.

@indepthstory
👍  
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@heigovannik ·
Welcome to Steemit! :)
👍  
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@iot-corp ·
How is it that I got 34 votes and yet only make  $1.65? I make much more on Forbes.
👍  
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@larutanton ·
Hi, and Nice to meet you, I hope you relief from you feet pain soon, glad your better!  And I think the reason why the 34 votes equals that is due to vote percent per voter, like i'm less then a penny...etc. compared to my posts you did well, I hope others are helped from hopefully what they learned from your case. Peace, Take care.
👍  ,
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@iot-corp ·
Thanks, that is some good insight. Thanks for reading my story. The feet may always hurt but there may be some herbs that help ease the pain. :) I am following you and I hope you are having a great weekend!
👍  ,
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@giantbear ·
Welcome to Steemit!  I will resteem your story for more exposure.  Remember to engage with others and not to give up.  We all started low and gradually we build each other up.  Just hang in there.
👍  
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@iot-corp ·
$0.07
Thank you so much for the welcome and for resteeming my story. I appreciate you for sharing your insights as well.
👍  ,
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@giantbear ·
Just continue sharing.  In the end it will all be worth it.
👍  
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@len.george ·
$0.02
Welcome to Steemit. come for the friendship, posts etc, the money will come much later.
You have done the hard yards to be still alive and here, read and comment on other's posts, put up lots of your own and things will happen in their own time.
👍  ,
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@iot-corp ·
$0.54
Thank you for reading my post and for your feedback on how to approach this platform. I love to write and so glad that I found this site. I am following you and we'll look forward to reading your posts in the future.
👍  , , , , , , , , , , , , , , , , ,
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@len.george ·
Thank you for following the ramblings of an old fella.
As my kids would say, there is a lot of BS in there
👍  
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@bigbear ·
Welcome to steemit wonderful platform for me anyway, if you read some of my post you will see that family is reallly the one thing we need always.  Hope you the best and will follow
👍  
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@iot-corp ·
Thanks for your input. I have followed you and will look forward to reading your posts!
👍  ,
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@bigbear ·
Thank you so much
👍  
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@tlester · (edited)
Wow & Welcome! Youve been through alot. Glad you are here. We DO have to believe our doctors can be fallible. We should trust our own instincts and take control of our health. Thank you for sharing. Following.
👍  
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@iot-corp ·
Thank you for the welcome. With so many specialties in medicine we can't expect one doctor to know it all. I appreciate the time you took to read my story. I am blessed to be here!
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@tommyquest ·
Congratulations on your recovery so far. I had a similar experience when 4 years ago I had a stroke that left my left side partially paralyzed and I now have to use a wheelchair to get around. Good to read your story. Upvoted and resteemed
👍  
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@iot-corp ·
$0.51
Thank you so much. Thanks for your help and I have true empathy for your situation. We never would have expected these things to change our lives.
👍  , , , , , , , , , , , , , , , ,
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@chuckypita ·
Wow.  Talk about strong character.  All the best to you!
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@ceciliakeirstead ·
$0.03
Your story shocked me (I had never heard of GBS)! I'm glad that you managed to find treatment and I think it's noble of you to raise awareness and look out for other people. I love your message about empathy, and I wish you success here on Steemit!
👍  
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@iot-corp ·
$0.12
Honestly, I am still in shock that I went through that experience. I am grateful to be alive and glad I fought when I could have laid down and died. Thank you for your comments!
👍  ,
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@ceciliakeirstead ·
$0.06
Thank you for writing!
👍  
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