Updated: Sep 8, 2021
Dr. Stephen Phinney
As many of you know, I have been undergoing testing since June of 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, and chronic muscle spasms. Due to this concern, we began seeking medical advise.
After over $40,000 of testing and probing, our medical team found these diagnosis - a sinus disease, degenerate spinal issues, and a few other minor findings. But, when our 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 test 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 with an inability to send messages to and from the limbs, i.e. numbness.
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 parts of the body. 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 the voice, difficulty in swallowing, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it 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. In my case, due to the aggressive degenerate nature, Plasmapheresis (plasma exchange) and intravenous immunoglobulin (IVIg) therapy were ordered in large doses. Typically, IVIg, also known as "infusions," are used as the first-time of 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 in between relapses. As 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 kept under control through occasional plasma exchange. However, as warned by my doctor, some individuals are left with some residual numbness or weakness for life. This is due to the fact that dead nerves cannot be restored. For example. Jane's "drop foot" is a condition that cannot be reversed or 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 are firm believers 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 a physical healing, the "disease" should be used to minister to others. As of now, this is our mission.
Before closing, there is something I must say. While many of my days are challenging, my beloved wife, Jane, is my earthly hero. Her devotion to caring for me is beyond human understanding. Honestly, I would have given up long ago without her support. I am one who knows that a woman completes a man.
As for our readers/viewers, count on this. As long as God makes use of my voice and hands to write, & podcast, I will continue to reach the masses for and through Jesus. We are here for a reason. I know that reason.