What were my Neuropathy symptoms prior to receiving Intravenous Gamma Globulin (IVIg)?
By LtCol Eugene B Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic PN for 45 years due to exposure to Agent Orange.
My condition and increasing disabilities grew critical by 1999 (30 years after exposure to Agent Orange in Vietnam) following decades of an undiagnosed and untreated immune mediated polyneuropathy with recorded symptoms manifesting since 1969.
In 2015 we have made some progress thanks to many brilliant doctors such as Dr. Norman Latov, MD PhD of Weill’s Medical College – Cornell University; Dr. Thomas Brannagan III, MD of Columbia University; Dr. Alan Berger, MD SHANDS, University of Florida; Dr. David R Cornblath, MD John Hopkins University School of Medicine and Editor-in-Chief of the Journal of the Peripheral Nervous System/Peripheral Nerve Society; Dr. Walter Bradley, DM Professor Emeritus of the University of Miami Medical School; and all the doctors listed on the ground breaking article “Guidelines for the diagnosis and treatment of chronic Inflammatory demyelinating polyneuropathy” published in the Journal of the Peripheral Nervous System, pages 282-284 (2003).
But we still have a long way to go to get the knowledge into the hands of treating physicians and this is a major challenge. While Dr. Walter Bradley told me that many called this article just medical opinions, yet they are being proven correct and it was medical opinions based on medical ignorance, which lead to my total disability by 2004! This article saved what was left of my life when it was placed in the hands of a neurologist who did not know.
This is why increased clinical training is most important for even the best neurologists when it comes to the diagnosis and treatment of the neuropathies. This is why neuropathy research is CRITICAL to the health of many of these patients and why old ideas and conclusions must be challenged by solid new thinking and brave new critical questions about medical assumptions. We must see neuropathy as a new frontier where we have only begun to ask the right questions to find the right answers that challenge old assumptions.
Some of the remitting and relapsing symptoms prior to the IVIg which grew in intensity over three decades, would include difficulty breathing and talking at the same time; severe spinning sensations 24/7; electric like shocks all over the body by 2004; skin in the upper body so sensitive I would have tears when even the bed sheets touched the upper body skin; severe bone pain in the feet and legs on walking; inability to stand for more than 5 minutes; inability to walk but a few feet; transition from a cane to a wheel chair and then into a motorized scooter to get around; chronic fatigue every day for certain periods of the day; legs very week and numb; severe leg muscle cramps; dropping things when I thought I had a grip on them; tripping when my toe caught on the floor; a heavy cement feeling from the waist down when I tried to walk too far; a feeling like my body had been shot full of Novocain; heavy upper body sweating especially at night; no tear production; digestive problems with alternating diarrhea and constipation; and urinary overflow incontinence, among other symptoms of neuropathy.
For years, each symptom was ascribed to another medical condition with never a thought about an immune mediated neuropathy. The Veterans Affairs Administration reviewers in fact, first claimed all the symptoms were due to something else, and then later when there was no way out for the VA lawyers due to my Neuromuscular Neurologist who knew better, the VA lawyers lied four times, denying that the symptoms or diagnosis were even in my medical record!
NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: firstname.lastname@example.org
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician. These articles reflect the subjective experience of the patient while living with neuropathy and Intravenous Gamma Globulin Infusions