Medical Update: For those of you who are new to my journey, several years ago, I began to have symptoms of loss of feeling in my legs.
Dr. Phinney, I would appreciate you sharing your journey with us regarding the neurological disease you suffer. It will encourage the Body of Christ.
Since our ministry’s focus for 2023 is stories of deliverance amid suffering and the testing of faith, I have been admonished to start with my recent and ongoing journey.
As some of you know, I have been undergoing testing since June 2020.
For those of you who are new to our journey, several years ago, I began to have symptoms of loss of feeling in my legs. This regressed into many other symptoms that ultimately led to weakness, numbness, loss of deep tendon reflexes, chronic muscle spasms, and severe hand tremors. Due to this concern, we began seeking medical advice.
After over $40,000 of testing and probing, our medical team found these diagnoses - a sinus disease, degenerate spinal issues, and a few other minor findings. But, when my oncologist found MGUS, a condition where an abnormal protein (M-protein) is found in the bone marrow, we were alerted to early signs of bone marrow cancer. While my numbers remain low and not alarming, we were recommended to yet another neurologist, one of the best in Kansas.
In our first meeting with the new neurologist, he immediately confirmed a degenerate condition. Instead of ordering all the tests again, he ordered a spinal tap. The results of the "tap" confirmed what he suspected - CIDP. It is a disease that attacks the nerve sheaths, destroys them, and leaves the nerves unable to send messages to and from the limbs, i.e., numbness & weakness.
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs, arms, and, if not treated, most body parts. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. It often presents itself with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, loss of voice, difficulty in swallowing, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and is considered the chronic counterpart of that acute disease.
Treatment for CIDP includes corticosteroids such as prednisone, which may be prescribed alone or in combination with immunosuppressant drugs, which I opted out of doing. Due to my aggressive degenerate nature, Plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg) therapy were ordered in large doses, and I receive monthly treatments. IVIg, also known as "infusions," is typically used for the first time in therapy. From what we understand, our neurologist will maintain IVIg until further notice.
The prognosis is subjective at this point. The course of CIDP varies widely among individuals. Some may have a bout of CIDP followed by spontaneous recovery, while others may have many bouts with partial recovery between relapses. In some cases, as in mine, it is consistently degenerate. Thus, why the neurologist is using an aggressive form of treatment. In most cases, the disease can be controlled through occasional plasma exchange. However, as warned by my doctor, some individuals are left with some residual numbness or weakness for life. This is because dead nerves cannot be restored.
Now with the medical jargon aside, we believe in a God that can heal any disease if He so chooses. I am up for that. Jane and I believe that God uses all things for His good. Meaning droves of authentic Christians are in need of facing physical problems as being under His sovereign plan. In those cases, the individual must shift gears. Instead of focusing on physical healing, the "disease" should be used to minister to others. As of now, this is our mission.
Bringing my journey up to date.
While we are eternally grateful for my monthly infusions, which assist in the degenerating disease, I have many difficult days and nights. Walking without pain is a thing of the past. Restless nights are increasing, and my greatest challenge is the hand tremors, particularly in my right hand. I use a weighted glove to keep my hands on the keyboard. In filming, if I stand still, I can maintain this ministry venue.
As many have asked, I do go in and out of despair. Each time I cry to the Lord, an inner voice repetitively says, Put your hands on the keyboard. Honestly, this has become the practical side of my salvation. Jesus has confirmed the importance of ministering to others when I am suffering. It works almost every time.
While God chooses to heal many of His children, my healing is in suffering for the sake of Christ. One of my dear friends, and Board member, Dr. James Fowler, recently had his lower legs removed due to shared nerve issues. Dr. Fowler has been a leader in the present church age regarding the message of our union with Christ - authoring many books on the topic. Here is what he wrote me several days ago:
Some people are almost aghast when they learn that I had both of my lower legs amputated in 2022 because of the debilitating effects of diabetes. They do not know how to respond. The very thought of losing both of one’s lower extremities is an inconceivable and unimaginable tragedy in the minds of some. But I maintain that it is the best thing that could have happened to me. The pain of diabetic neuropathy in my feet had increasingly plagued me for many years, making it excruciatingly painful to walk any distance. When they cut off my feet, they cut off my severe pain. I know it sounds ironic and incongruous, but it is true – the neuropathic pain in my feet was obviously gone when I had no feet.
Life is as good as it has ever been. God’s grace and love are more keenly experienced and appreciated. What has occurred in my bilateral amputations has drawn me closer to my Lord and made me more sensitive to the needs of others. I didn’t need those feet to continue to share my thoughts in writing.
Dr. Fowler is not only one of my mentors; he is my hero. Through the years of knowing him and his dedication to writing for our ministry, I discovered a man that lives what he preaches. He inspires me to keep moving forward in Christ.
Before closing, there is something I must say. While many of my days are challenging, my beloved wife, Jane, is another one of my earthly heroes. Her devotion to caring for me is beyond human understanding. Honestly, I would have given up long ago without her support & prayers. I am one who knows that a good woman is hard to find. I am here to tell you that the Lord found one for me forty-five years ago.
As for our readers/viewers, count on this. As long as God uses my voice and hands to write, film & podcast, I will continue to reach the masses for and through the strength of the indwelling Jesus. We are here for a reason. As for this suffering believer, I know that reason.
I am interested in reading your story of deliverance amid suffering. Please take a few minutes to share with me. In the fall of 2023, we are scheduled to publish a book filled with stories of deliverance in Christ. Consider sending me your story.
Send me your story: HERE
Thank you for sharing Stephen.