Patient Stories

Jordan Acosta

Jordan, CIDP Patient

I was diagnosed with atypical CIDP in March 2022 following a horrible case of COVID that resulted in being hospitalized for a couple days. I can’t begin to eloquently describe what it felt like when my symptoms started. Like sharp pins and needles all throughout my legs that made me think my legs were falling asleep constantly. The feeling would morph into pain throughout the day and began to spread to my arms as well. I began to lose coordination and remember getting so frustrated when I would drop things because my limbs no longer felt like mine.

After numerous tests (spinal tap, EMG, MRIs) plus the discovery of slowed nerve conduction as well as my loss of reflexes, proprioception, and gait imbalances, I was diagnosed and sought treatment immediately. I am forever grateful for my team of neurologists and doctors that fought for a speedy treatment route to preserve the movement that I still have. I truly believe that without the quick intervention, I wouldn’t be able to maintain the life I do now. 

My treatment has been aggressive with IVIG infusions every 15 days for the past 2 years. And although the infusions and pain relievers are a constant reminder of my condition, I try to have a heart of gratitude to be able to receive treatment that sustains me. I always get myself flowers after each infusion as a remembrance for the courage and strength that I have to endure them. And even though the end of my treatments and recovery may not be soon, my faith has been a pillar of light each and every day. However, as I type this, I know what it also feels like to feel hopeless and angry and so confused as to why it is all happening. I encourage you (the way I do myself) to allow yourself to feel all the emotions because this is difficult and scary. For myself, journaling, praying, and relying on my support system has been the most beneficial way to cope with the hurt and grief of this condition. 

I hope sharing my journey can encourage you or your loved one to know there can be joy and unexplainable peace that is felt through these hard moments. I can be grateful for the perspective of knowing what is truly important and be so proud of all the things I can still do, while also crying before every infusion, getting angry when my legs or hands still fall asleep, and anxious for relief. I won’t pretend to know what you or your loved one are experiencing, but I pray that knowing there is someone else who may feel similar emotions can help your coping as it does mine. Thank you for allowing me to share, and I am so grateful for the opportunity to walk in this journey with a great community.