Christina Thielst from Santa Barbara, CA
In early January 2017, I began feeling numbness in my toes. As it progressed, I considered a doctor visit, but decided to go on a planned trip and call for an appointment when I returned to the US. Over the next couple of weeks the numbness and pain progressed up my feet and my balance and coordination started getting worse. I had scheduled an appointment with a neurologist and he ruled out MS and a tumor, diagnosed me with idiopathic peripheral neuropathy and sent me on my way for some physical therapy.
My condition worsened and I fell, couldn’t climb stairs, could hardly use my arms and hands, had to stop working and started having to take long naps after any physical effort… like going to physical therapy. I had been worrying that wasn’t the right diagnosis… there had to be something causing my peripheral neuropathy. After ruling out Lyme with lab testing, I got my case reviewed by two academic physicians (Mayo and Tufts) and they both suspected GBS. They told me to find a neuromuscular physician at a nearby academic setting.
Before GBS
My paralysis had progressed up to my pelvis, I had to sleep propped up on pillows to breath, and I was stuck in the house until my daughter or husband returned at the end of the day. Falling, had become an expected occurrence if I stepped on uneven ground, turned too fast, wasn’t careful with steps or leaned over too far. I wasn’t hospitalized and learned I had a more atypical presentation.
In July, I finally had an appointment at UCLA and after an EMG and lumbar puncture got a diagnosis of GBS in September – at the age of 54. It was likely caused by the flu-like symptoms I had the week between Christmas and New Year’s Eve. I then began home IVIG therapy once every four weeks and slowly started moving better and having more energy.
I’m a former hospital administrator and writer and typing has been a huge challenge due to jittery hands and way too many typos. In November, I began telehealth hand therapy, so I could improve my typing. While it has improved, I still sometimes type with only two fingers – like today.
I have my cane and am holding on, I'm next to my family who is standing. I was afraid I would fall and it was a long way down stairs to the bottom in this amphitheater. It is just an example of me accommodating given my GBS.
Here we are in April 2018 and I still have numbness, pain and weakness … mostly in my feet. I must rest with my feet up a couple of times a day and need a full day of recovery if I have an especially active or stressful day. I just started physical therapy again to build strength in my arms and address the severe Charlie Horses in my legs.
My physician is working to improve my sensory ataxia and just increased my IVIG infusions to every three weeks. She has also prescribed nortriptyline to help with the pain and sleep.
I’ve blogged since 2005, so my posts this last year include details of my GBS journey. I’ve also added an online shop to share my new-found knowledge on innovative tools that have helped me stay active in spite of my challenges.
Visit Thielst.typepad.com or follow me on Twitter @NavigateCare , Pinterest @cthielst and Instagram @cbthistle
https://youtu.be/6tEp79QbkAQ
