Hey there. This past year, I had what was the start of the worst experience I have ever experienced in my 26 years of life. One day, I started experiencing nausea and vomiting. I had what I thought was food poisoning. It became clear that this wasn’t the case. The vomiting continued for three weeks. I was unable to eat or drink anything without vomiting. I also was unable to work. During this three week period, I had six emergency room visits, four visits with PCP or specialist, two CT scans, ultrasound, upper GI series, and an EGD. Doctors were unable to determine the cause of my vomiting and nausea. The vomiting eventually stopped and I started to recover.

Towards the end of my stomach issues, I started experiencing a tingling feeling in my feet and legs. That tingling quickly turned to a sharp pins and needles pain. I then started experiencing weakness and I was having trouble balancing and walking. From there, I couldn’t walk without my knees buckling. I started to experience a severe pain in my legs and feet. The pain was worse at night and I was having a difficult time sleeping. I soon lost the ability to walk and had to use a wheelchair. I started feeling the tingling in my hands and arms. Not long after that, my abdomen felt numb. Eventually, it was determined that I have Guillain-Barre Syndrome (GBS), which is a disorder in which your body's immune system attacks your nerves and leads to paralysis.

It’s not the most pleasant thing in the word. What’s worst is it’s really rare (fewer than 20,000 cases a year) and I haven’t had the fortune of being in an area where there are tons of experts. In fact, by the time I was diagnosed properly, it was said by the amazing neurologist that I finally found that I was just a couple of days away from the paralysis caused by GBS spreading into my diaphragm. I wouldn’t have been able to breathe and would be put on a ventilator. Something that unfortunately happens to many GBS patients.

Fast forward to present day and nearly a year since having IVIG treatment for GBS. I am now able to walk after being in intensive inpatient rehab for 3 weeks and having outpatient physical therapy 3 times a week for several months. The numbness and tingling has moved down my body and is now below my knees (GBS works from the toes up and as you recover, it works it’s way down the body).

Hers my cry for help: I am in pain. I am in constant pain and discomfort. I take Gabapentin for nerve pain 4 times a day and it doesn’t seem like enough. My feet are so sensitive that I can step on a crumb and it literally feels like I have stepped on several shards of broken glass. My toes are so sensitive that it hurts to even put tennis shoes on. I can't go out and be out long without my legs feeling fatigued. I can't squat or bend too low without severe pain. It has been rough and I don't know what to do. I am now living near Atlanta and I am hoping to find a neurologist that has extensive knowledge of GBS and can help me out. I don't know where to go from here. If anyone can help, I would appreciate it.