Late on a Friday afternoon in September of 2014, I struggled to take a seat in Dr. Jonathan Goldstein's office in the Neurology Department at HSS. I struggled because my feet and legs were weak and tingling, my balance was poor and my proprioception was not much better. It had taken all my strength to travel from NJ to HSS for this appointment. I was hoping this doctor could determine why I had deteriorated so much over the past ten months and why the interventions previous doctors recommended had not worked.
With three orthopedists ultimately recommending some form of surgery to my spine, I opted for a visit to HSS. Dr. Lebl reviewed my many MRI's, scans, X-rays and reports and questioned whether my symptoms were primarily a result of my spinal stenosis. He recommended I see a neurologist at HSS and I scheduled an appointment with Dr. Goldstein. I will be eternally grateful to Dr. Lebl for his guidance.
So on that Friday afternoon, Dr. Goldstein met with my wife and I. He heard my story and also heard my wife say, "I love this man, please help him, something is seriously wrong." The doctor sent us across the street for an MRI and gave us his cell phone to call when we finished. He then called us back to his office , reviewed the MRI with the Radiologist and asked me if I was up to an EMG.
Since the staff was long gone, Dr. Goldstein had to open up the lab, turn on the lights and turn the heat up. Three fourths of the way through the assessment he said, "I am almost done and think I have the puzzle solved." Shortly thereafter we walked back to his office and he explained that CIDP, or Chronic Inflammatory Demyelinating Polyneuropathy, was an autoimmune disorder that was wreaking havoc with my peripheral nervous system and compromising components of my neuromuscular system. My myelin sheath was under attack by my own rogue antibodies causing my weakness, poor balance, double foot drop, etc. He recommended I start IVIG without delay and I began treatment within ten days.
The IVIG halted the progression of my debilitating disorder and within two months many of my symptoms improved and some disappeared. I am still recovering. I returned the wheelchair I rented but, thankfully, never did need it. And while I had leg braces fitted for me I needed them for only a brief time.
It has been 21 months since I received the diagnosis of CIDP and I feel I have made a substantial recovery. While I experience residual neuropathy in my lower extremities, I can once again kayak, garden and swim. I also take two mile walks with my wife. Prior to the treatment Dr. Goldstein initiated I could barely walk a block.
I owe Dr. Goldstein a great deal of gratitude for attending to me for many hours late on a Friday night and for expediting the assessments he needed for an accurate diagnosis. The treatment we started 21 months ago has made such a positive difference in my life. Dr. Goldstein has encouraged me to take an active role in my treatment decisions and referred me to the GBS/CIDP foundation to further my understanding of CIDP and my self care. Due to Dr. Goldstein's intelligent, thoughtful and timely interventions, I have indeed gotten "Back in the Game".
All by Physician