Bryan's Story

Today, I wanted to share Bryan's story because it really resonated with me. He was kind enough to share his story on the GBS/CIDP Forum to serve as motivation and hope for those going through the same ordeal. I did do some editing, but it takes nothing away from his story and only serves to enhance and further educate.

My name is Bryan and I am 51 years old. So when did it all start? I can’t put a date on it, exactly. In June/July 2016, I started to get winded doing my job and thought it was just my asthma acting up. The doctor prescribed me some medication and sent me home. I also experienced random pains; a finger on my right hand and another on my left felt like a tendon had been pulled. Also, a big toe would hurt and then the other one would, but I thought it was just my shoes. I started to feel even more fatigued in late July. By mid August, I had very, very mild numbness start in both hands. With a bad back, my chiropractor just attributed it to a pinched nerve. A couple weeks later, my feet started to hurt and become numb. At that point, the chiropractor to me to go see a doctor because something “bigger” was wrong. In early September, blood tests showed a cratered B12 level; symptoms of B12 deficiency include possible numbness in both hands and feet. The plan was to build the B12 back up and return to the doctor's in a month for a follow up. In mid-October, my B12 levels normalized, but the numbness was getting progressively worse. There was no real motor control deficits as of yet. Symptoms started getting even worse the following month. By the end of work, my feet would hurt so bad that it became difficult to walk to the car. I subsequently went back to my general practitioner who referred me to a neurologist. I got in right before Thanksgiving. Blood tests showed nothing out of the ordinary. A week later, I had a spinal tap which indicated abnormally high levels of protein. I was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and started on 60 mg of Prednisone. Prednisone is a corticosteroid that is oftentimes effective as an immunosuppressant drug. One of the major indicators of CIDP vs. GBS is the body's response to corticosteroids; CIDP patients typically see positive results, whereas GBS patients report no changes. During December, symptoms got worse and Prednisone seemed to be ineffective. I went back to see the neurologist on January 2 and collapsed in his examination room as my legs gave out. Luckily, the hospital is only 50 yards away. Symptoms, at this point, included loss of motor control in my feet (my right ankle buckled with any weight applied), the ability to taste, and the feeling in my torso, arms, hands, feet, and legs. I lost my libido as well and experienced shortness of breath along with extreme fatigue. I could barely walk, collapsed several times, and couldn’t pull myself up when I fell. On January 3, I started the 5-day regimen of IVIG where response was immediate and within days, I was able to work again, but not without extreme effort. The IVIG definitely jump-started my recovery. I also remained on Prednisone, but a tapered dose of 40 mg a day. I had to use a cane during the first two weeks of my recovery. I couldn’t walk down steps. My feet still felt semi-paralyzed and my hand felt numb and on fire at the same time. After that, I started to get better, incrementally, day by day. The numbness in my hands and feet started to recede towards the toes and fingertips every day. My taste returned, the shortness of breath has gotten better, and feeling has returned to my torso. I will be returning back to work Valentine's Day week. As of today, the paralyzed/pain feeling in my feet has receded to the toe line. It still affects my gait and balance, but I don’t need a cane anymore. Walking down steps is still a challenge, but walking up them is 90% back to normal. The same goes for my hands. The pain has been pushed to the finger tips. I assume it is my nerves recovering from the trauma. Also, my right ankle, which turned numerous times during early January, has finally healed and has helped my balance and gait immensely during the last week.

I have a couple thoughts on physical therapy I'd like to address. My therapists are great people, but I think we pushed too hard for a couple of weeks and overtaxed my muscles in my legs, which made me feel as if I was going backwards. They recognized this and we cut back on repetitions. Once we did that, I started to feel instantly better. I also try to walk a quarter mile a day. My advice is to exercise in moderation. Overtaxing muscles, for me, made me feel as if the CIDP symptoms were getting worse. *As an aside to Bryan's story, this is one of the first things physical therapists are taught when they are learning about GBS and its variants! It is always a bit troubling to hear stories like this because it could've had dire consequences as over-fatiguing muscles whilst recovering plays a major role in recovery time. It can cause a huge set-back. Thankfully, that wasn't the case with Bryan and they adjusted quickly.*

Prednisone is a double-edge sword. I think once the IVIG kicked in, it allowed the corticosteroids to keep the immune system in check. Of course, long term use has its side effects. I feel like I took 30 caffeine pills all at once! I’ve gained weight, especially in the stomach and my face has turned round and, well, fat! It also causes sleep issues, but that has gotten somewhat better with time.

Now that I am recovering, Gabapentin seems to finally offer some level of relief for the nerve pain. Before, it seemed useless. *My personal neurologist recommended Gabapentin or Neurontin (one of its brand names) over other anti-convulsant drugs such as Lyrica because people reported less side effects with Gabapentin. I was on a high dose of Neurontin in the beginning with little relief so we decided to go with Lyrica. Not only was it not effective either, it also caused double vision, so I ended up switching back to an even higher dose of Neurontin, which helped a little.* I would love for the remaining neuropathy to heal, but I’m happy right now that I’ve recovered this far. Hopefully this offers some hope or insight for others. Best wishes to all my fellow CIDP sufferers.