Thomas's Story

"My name is Thomas, but everyone calls me Tommy.

I was a painter on Vincent Thomas Bridge in San Pedro, CA and loved it! I have CIDP and was diagnosed in July 2009 at the age of 40 and it is one of the hardest things I've ever been through still. Paralysis started in both of my hands and moved up my arms during the initial onset of symptoms. Before it got even worse, I went to my primary care doctor who suspected I was experiencing Carpal Tunnel Syndrome. A nerve conduction test was performed and results confirmed my doctor's suspicions. I was scheduled to have surgery for Carpal Tunnel Syndrome until the weakness and eventual paralysis moved to my legs. I started having trouble standing up from a seated position and my legs inevitably gave out completely as symptoms progressed. The doctors became baffled by this new symptom. I went to see a neurologist who let me know what I had was very serious, but couldn't quite verify a diagnosis of CIDP until all the tests were performed and the results were interpreted. The tests and results took 6 months and by that time, I was constantly falling down. I recall my wife and I being extremely scared, thinking I was dying. Within that waiting period, I went to see numerous doctors and was finally admitted to the hospital. A spinal tap or lumbar puncture was performed showing elevated protein levels, which is an indication of GBS/CIDP. I was started on an IVIG regimen and was told that my life was going to change forever. The doctor handed me a 1 page print out on CIDP and left.

The IVIG treatment was successful with immediate results. I quickly regained the use of my arms and legs, however the weakness was most prominent in my legs so I had to be discharged from the hospital with a walker. I was able to return to work for about 3 months, thinking I was back to my normal self, but in January 2010, I relapsed, could no longer work, and had to retire. It took a lot longer to regain the use of my limbs this time around. The walker became a constant companion once more. I eventually upgraded to a cane for a couple of years. Some days I feel better than others. Other days will be very fatiguing and painful, which limits my ability to do every day tasks. My wife and son are my biggest support system; without them, I'd be lost. I now receive IVIG treatments (45 grams) for 2 days every 4 weeks."

I often see that fatigue is a common residual effect of GBS/CIDP. Whether that gets better with time or not is dependent upon each individual case and their will. I feel like a lot of people who have suffered through the same syndrome are oftentimes too critical of themselves and their capabilities. I know I certainly fall into that category. The couple weeks ago, I was determined to get through the Kenpo portion of P90x to get back into shape and only got through 10 minutes of the actual workout since there's a warm up in the beginning. It was a little hit to my ego because I used to breeze through that workout. I accepted the fact that I am not far enough along in my recovery to do such crazy cardio just yet. I am happy to hear Thomas has a great support system. I don't think any of us would get this far without strong support from loved ones. We're very lucky! Keep strong, Thomas, and never give up!