One Man’s Journey with Neuropathy

His nightmare began in 1969 – one year after leaving the Vietnam War. Symptoms of autonomic and polyneuropathy neuropathy affected his breathing with upper body paralysis that brought him to his knees and affected other parts of his body; mysterious chest pains, electric shocks, painful skin, physical exhaustion, unexplained silent tachycardia, urinary and digestive problems all contributing to his nightmare.

An Army officer, he struggled for 18 years with severe electric shocks that began, uncharacteristically, in his upper body. Occasionally the symptoms would disappear and he would think the nightmare was over but it was not to be – the cycle would always begin again. The loss of stamina and periods of total exhaustion – the perception by others that it must be psychological – left him unable to continue. His distinguished military career came to a screaming halt. With medical records that contain many negative comments about his condition and his cycle of pain and symptoms, he retired from the Army in 1987. His dream was over and he hoped his nightmare would go away!

Still reeling from the circumstances of his retirement, he began working in operations for retirement homes and services for the aging in Florida. For 14 years he held his head high, managed to keep smiling and performing his work with distinction, becoming a VP while avoiding those who felt his continuing cycle of symptoms was due to his inability to ‘handle stress’.  He even had forced temporary salary and time reductions as punishment for being hospitalized with heart problems so that he would learn how to “not work so hard.”

By 1999, his condition made breathing and speaking simultaneously very difficult; his skin was so sensitive that he would scream when sheets or clothing touched him. He built a PVC frame around his body so he could sleep.  Walking became difficult due to the transient paralysis of his legs and he used a wheelchair off and on; it was difficult to stand because of the bone pain and sometimes too painful to even sit.  Some doctors even made fun of the fact he carried a pillow to sit on or made fun of his using a cane, because all tests were “normal.”

For thirty two years his doctors kept saying, “All tests are normal”. The electric shocks slowly spread from his left arm and scapula to his other arm, his feet, legs, and eventually to every part of his body – decades of torture. Eventually, the periods of temporary paralysis and other major system failures made working impossible; he was forced to retire again in 2000. He was convinced, “I had descended into hell” and yet most of the time he kept smiling as he struggled to function daily.

Objective tests in 2000 confirmed significant damage to his peripheral nervous system even though, unbelievably, some experts were still denying the reality of his symptoms. He felt medically isolated and psychologically devastated when his decade’s long history and the objective tests were ignored by an expert.  “Not all of these symptoms are neuropathy”, said one expert.  Then in April 2004 based on a medical article from The Neuropathy Association lead by Dr. Norman Latov MD (Columbia University, New York) with contributions by Dr. Alan Berger MD (University of Florida, Jacksonville) and Dr. Walter Bradley MD (University of Miami) plus 18 other neurologists, he began receiving gamma globulin treatments (IVIg) and has had positive results. Every symptom back to 1969 responded eventually in some way to the infusion.  Today he receives this infusion every twenty one days using FDA product approved for CIDP called Gamunex C Liquid 10%. Without this infusion his nightmare of symptoms returns and otherwise he will be unable to walk at all or breathe due to damage to muscles in the chest area.

Then as if this was not enough, many mistakes were made on the initial attempts at infusion using a cheaper product, infused too fast, to high liquid volume, need for Lasix as kidneys could not handle the fluid volume resulting congestive heart failure. For nine months doctors ignored the problem and this almost cost him his life with repeated trips to the emergency room.  When a better product was given with Lasix IV pre and post infusion, he responded to the treatment. Eventually all this was adjusted after nine months of trial and error plus a change of Neurologists as well as two changes in the infusion sites. Believe it or not in March 2005, he ended up critically ill in the emergency room when the infusion was refused by a hospital, resulting in a delay of 42 days!

Then Medicare refused to pay for the treatment, as they stated that it was medically unnecessary. In 2009 he was forced to travel two and a half hours to get the infusion at the only location in Florida who would give it to him.  In 2010 he had no choice but to move to Fort Lauderdale to reduce his travel time. Following these years of struggle, in 2016 the getting the infusion is less a challenge as progress in medical knowledge has increased.

He has testified before Congressional Representatives on this issue and is helping with the filming of the documentary, “Dying for Help” being produced by the Alliance for Plasma Therapy in hopes of resolving these issues for all patients in need of IVIg therapy.

By 2005 his extensive medical history and continued testing confirmed autonomic neuropathy – challenging decades of denial by experts in the medical system who ignored four other doctors who stated that symptoms were present.

In 2007, his neurologists told him that he had small and large fiber neuropathy, motor, sensory and autonomic.  With all other causes of his neuropathy ruled out by medical testing, he was told in 2009 by his treating Neurologist that there was an “extremely high probability that his current diagnosis and medical condition is due to a toxic polyneuropathy because of exposure to Agent Orange in Vietnam”. Only in 2015 was it acknowledged that Agent Blue that was used had heavy dosages of arsenic, a neurotoxin of first order. He now knew why the animals in Vietnam were dying around him in 1968. He still wants to know what took leaders so long.

In May 2009, he shared some facts about Chronic Neuropathy due to Agent Orange exposure before the Fort Lauderdale Mayor and City Commission and to hear this short address go to http://neuropathysupportnetwork.org/blog/ for a video clip of his comments.

On January 7, 2010, Veterans Affairs finally confirmed a total permanent service connected disability using half of his diagnosis. Lt. Col Eugene Richardson, USA Retired, has spent 45 years living and coping with the symptoms of his progressive neuropathy and the devastation from toxins used in Vietnam such as Agent Orange and Agent Blue.

Following four decades of denial, it was no surprise to him that in 2012, the Veterans Affairs Administration finally recognized Chronic Peripheral Neuropathy as presumptively due to exposure to Agent Orange.  Yet the VA still requires “early onset” diagnoses within one year of exposure during a time when the medical community was unable to diagnose or even recognize neuropathy!

During the decades of the Vietnam War and after, even until 2014 clinical diagnosis and recognition of the symptoms of PN are just now being recognized and diagnosis and treatment are difficult.  For decades with the symptoms clearly recorded in LTC Richardson’s medical records, the VA denied all of this information for six years, relating it to other conditions and then used misstatement of facts four times about the clear statements in his medical records.

In 2014 by medical testing at the VA Hospital in Miami, it was again confirmed that he had been dealing with a severe motor and sensory neuropathy with Autonomic symptoms with damage to both the axon and myelin.

In 2015, ten years following the submission of his claim for service connection of his Peripheral Neuropathy, the case was heard by the Board of Veteran Appeals Judge in St. Petersburg, FL. A favorable decision was granted, with recognition of the Clear and Unmistakable Errors (CUE) made by the VA at the first response to his claim in 2006 and found that the letter that transmitted the Statement of Case (SOC) was mailed to the wrong address. The Judge corrected the effective date of his 100% service connected disability back to the original date of filing in 2005 based both upon the CUE’s and the failure to send the SOC to the veteran.

This case is an example of the false premise on which current VA law of ‘early onset’ is based claiming that “a neuropathy could have been diagnosed and recognized at the 10% disabling level during the years during and following the Vietnam War. In this case there was clear evidence of the symptoms in his record, but they were never recognized as related to neuropathy and in the initial rejection of the claim in 2006, the VA even misquoted the information in his medical records in the official VA documents.

Lt. Col. Richardson is a graduate of the Command and General Staff College and attended the U.S. Army War College for senior officers.  He holds a Bachelors of Arts in Philosophy; a Master of Divinity in Pastoral Care and Counseling; a Master of Science in Management; a Master of Education in Adult Education; and a Master of Science in Counseling.  With decades of experience as an educator, counselor, and pastor, he uses his vast knowledge and experience to provide straight answers and insight to those suffering with any form of neuropathy.

Before he became too disabled to continue, he led three neuropathy support groups in Florida and taught a seminar, “Coping with Chronic Neuropathy”, which is endorsed by board certified neurologists at major universities.  This seminar became a DVD production produced by professional volunteers in November 2010 at Afterhours Music, Inc. of North Miami, Florida. It is distributed FREE of charge using donated funds through the Network for Neuropathy Support, Inc., dba Neuropathy Support Network, a non-profit Florida Corporation. In 2014 the DVD was revised to insure ALL neuropathy organizations can make it available to ALL neuropathy patients.

In June 2010 he received the annual national award in recognition of his work in helping other neuropathy patients and veterans from the Neuropathy Action Foundation, Inc. of Scottsdale, AZ.

Besides providing daily volunteer counseling to neuropathy patients via phone, letter and the internet, in March 2011 between resting to recover from his daily bouts with exhaustion, he launched a website for neuropathy patients at www.neuropathysupportnetwork.org and has added another website www.neuropathyjournal.org.  The website contains volumes of information for patients and professionals and the content is reviewed and approved by medical professionals.

In 2014 he launched a website for Neuropathy Support Group Leaders that each individual support group can use as a resource for meetings, outreach, and announcements and as a resource of information for their work as group leaders.

How does he view all of this fun? Having grown up on a dairy farm in Pennsylvania he learned the values of hard work, creative problem solving and determination early in life. As an Eagle Scout he learned good values reinforced by his life within the Church. Then there was the lesson to always make lemonade out of the lemons of life as Mom and Dad taught him. With his close friend as the Lord God, as His soldier, he found himself on a mission that he did not fully understand, but a mission that was greater than himself or his understanding.

SPECIAL QUESTION: What was the chance that David Morrow, now our Senior Vice President of the NSN, a Cancer patient with the right skills and I, would meet on that day and hour, in the infusion room of Imperial Point Medical Center Pompano Beach, Florida, in that situation when he needed to talk about his Neuropathy and I needed someone to help with the DVD production “Coping with Chronic Neuropathy” .  I knew nothing about distribution and needed someone who could design our website (for free)!  I was a counselor and teacher and I knew nothing about all of these challenges. About a trillion to one? The Bible says:  “All things work together for good to them that love God”.   Someone bigger than us both had a hand in this meeting.  As a patient with a Chronic illness, never stop looking for opportunities to fight back and bring new meaning into your life through your illness.  View Patients Helping Patients.

 

About the Author

LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS

Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.

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4 Comments

  1. I am a 52 y/o male suffering with peripheral neuropathies that have been worsening since 1997. I too went through several doctors and Neurologists for the past 15+ years in search of an answer. All of the Neurologists except for my current, said they could not find anything to support a diagnosis of any kind of Neuropathy. The primary physicians that have treated my symptoms with a grocery list of meds, have continued to be dismissive. As a retired USN Chief Independent Duty Hospital Corpsman(USMC Recon) that was very skilled with clinical medicine, I am extremely disappointed with the medical treatment/support that I have received through the Naval Hospital that I worked for while on Active Duty. I knew I had to change my primary to the outside if I had any chance of finding out what was going on with my health. At first my primary was very helpful and I was referred to John Hopkins Neurology where I was finally diagnosed with Poly Peripheral Neuropathies of unknown etiology; however, since that Neurologist provided treatment with Fentanyl and I persued disability due to being unable to work, my primary has been dismissive as well.
    First off, I always kept myself in great physical condition and even completed the Helsinki Marathon in 1996. I was misdiagnosed several times when I would see the Doctors about my painful feet, of which worsened extremely after that Marathon to the point of being diagnosed and surgical treatment of Tarsal Tunnel Syndrome; thats how painful! I have never smoked, drank occasionally at functions (stopped totally in 1995 due to my physical training). But I have had many exposures to toxic chemicals while training in the military; from CS, lead, unknown chem while training in Neveda test sites, and especially with known consumption of contaminated water while living in housing at Camp Lejeune NC. Although I have not been exposed to Agent Orange, I truly believe my Neuropathies are from exposure to other toxins while training in the service, including Agent Orange that may have been at that site in Nevada where I bivouaced for a week on open discolored ground. The problem is nobody wants to listen, believe it, or persue the possibility.

    Today, my symptoms worsen to severe pain w/numbness in my upper legs, chronic fatigue, chronic urgency to urinate, chronic sweating, nausea,severe pain from electric like shock in feet/thighs, and on/off hypertension.

    My life has become a nightmare of dealing with this since 2009 and I don’t know what else to do. I took myself off of the multitude of meds that Doctors prescribed for dealing with the pain. I didn’t want to deal with those side affects of the antidepressants and other pain meds any longer. I am currently on the lowest dose of a Fentanyl patch of 12mcg every 2 days with daily aspirin and tylenol. I am trying to cope with the increased pain but I feel very defeated and don’t know where to turn.

    I have decided to follow up with the Neurologist at John Hopkins to ask about the gamma globulin infusion treatment. I just hope for the best, but any guidance would be greatly appreciated.

    Semper Fi, do or die,

    Gene Lietz, HMC, USN-Retired

    1. I have no doubt that you are suffering from exposure to a toxin while in the military and possibility exposure to Agent Orange. The pursuit of the possible use of IVIg is wise and I will e mail you some supporting documents directly that you may want to give to your doctor as this is what I did and as a result they started the infusion in 2004. The articles are by 21 neurologists supporting the trial of IVIg to see if it works, as sometimes it does not work, and there are other options that need then to be considered to stop the damage to your peripheral nervous system. Make sure if you pursue a claim with the VA that you look at the information in the VETERANS/AGENT ORANGE tab on the website as you can use the same principle of “since all other causes for the patients neuropathy have been ruled out by testing, and the patients symptoms are consistent with a toxic neuropathy, it is highly probable that his current diagnosis is due to exposure to a toxin while stationed in the military”. I am going to see if Agent Orange was used on the bases where you were deployed and get back to you direct by E mail. God bless for serving our courntry! Col Gene

  2. I was diagnosed in 2008 at a VA hospital with bone marrow cancer, I filed a claim as I was exposed to Agent Orange while serving in Korea on the DMZ. My claim was a[[roved in 6 months and I was granted 100% Service Connected, then in August of last year when they had rotation Hematology/Oncology the new student doctor said that she did not think that I had Multiple Myeloma and I was discharged from the Oncology clinic with no options, no questions asked, just dropped like a hot potato. In the latter part of 2008 after the cancer diagnosis my complaints of lower back pain became increasingly more unbearable. I was sent for all kinds of scans and was finally told that I suffered from peripheral neuropathy due to a bone that had collapsed and was pressing on my spinal cord. this they said was probably related to the bone marrow cancer as it causes bone pain. I had the surgery a cervical lamanectomy in 2009. The VA hospital notified me that they could not get to my surgery within 30 days and they fee based me out to the renowned Duke Medical Center located across from the VA hospital. Here it is 3 years later and I still have pain, numbness, tingling, my whole left side is useless. I have to have help getting dressed, help tying my shoes, the VA put grab bars on my shower at home and the list goes on and on, but all they have done for me since 2009 is put me on Neurotin, which doesn’t help at all. I was forced to retire from work in 2009 and a function test which the VA ordered confirmed that I am unable to work or is unemployable. Now that the VA hospital is saying that I don’t have bone marrow cancer they are ordering a C&P exam.I would like to know if I can amend my claim to include peripheral neuropathy, also, I understand that their is something called “smuck” which will pay $100.00 per month for my ED. If I can amend my claim please tell me how and PLEASE tell me how I can get treatment for this neuropathy that has me now ambulating with a rolater (walker) and a cane. By the way, now that the VA hospital says I don’t have bone marrow cancer, they have since given me a diagnosis of lung cancer and were prepared to remove my entire upper right lobe, but after a biopsy said it wasn’t lung cancer, but they think it is sarcoidosis MAYBE. any advice would be appreciated.

    1. God bless you for your service to our country.

      Your story sounds like “Another Man’s Journey” and it is an example of the limits of medicine and supports the comment made at a conference on Peripheral Neuropathy in Washington DC back in 2010. If you ask four neurologists (insert your own specialist) one question you will get twelve answers (that often contradict each other). However under our medical system and laws, each doctor must render an independent opinion each of which will stand up in a court of law. The patient is caught in the middlee of these contradictions. A couple of thoughts, if you are ever re-diagnosed by a “student” of medicine, ALWAYS demand a second opinion from a Board Certified specialist.

      Neurointon is a anti-seizure drug used to stop “neuropathic pain”, that is pain caused by damaged peripheral nerves. Neuropathic pain requires that doctors work carefully with patients to find what drug or combination of drugs work for each patient as our systems are different. For years we had no drugs and often neuropathic pain was ignored or the patient was told it was all in their “mind”. We now know that neuropathic pain is real and must be treated. You need a Neuromuscular Neurologist to find what type of medication will work for you. Please go to the FAQ tab on the website as it discusses this very issue. No drug will resolve neuropathic pain completely…with the use of Nortriptyline, the only drug I could tolerate, I got 90% relie

      I have never heard of “smuck” regarding payment for ED. ED is no laughing matter as a great part of your life is stollen from you and few people provide support. ED can be caused by Peripheral Neuropathy, whether due to decreased blood flow, loss of motor nerves to control muscle or loss of sensory nerves. I would recommend speaking to a urologist to see if there is anything that they can recommend.

      As for treatment for PN, the treatment currently is to find the cause and treat it. However, you have cancer and this itself or the treatments for cancer can cause neuropathy, let alone what has happened to your back. I also would suspect that you may have an immune mediated neuropathy due to your exposure to agent orange and might benefit from infusions of gamma globulin (IVIg) but only a qualified neurologist can order a trial to see if it helps stop the damage. To see my discussion of IVIg go to the NSN TODAY taB and on the bottom of the list of categories select “Why Ivig? If you want an article to give to the doctor on a trial of IVIg, please send me an e mail direct to gene@neuropathysupportnetwork.org

      i do not know if you can see an outside Oncologist, but with the confusion over cancer or not, you need to be evaluated by a good Board Certified Oncologist outside the VA, to see what is going on. These cancers are not that difficult to diagnose although sometimes it can be a medical challenge. You did not mention anywhere if you were or ever did receive any treatment with chemo or such for the cancer which you may or may not have?

      As for the difficult challenge of living with severe disability, it can be a very frustrating challenge and a difficult one, but not impossible. Like you I use a motorized wheelchair all the time now and I am 100% disabled, but with a determination of those who do not know when to quit (too stubborn) I press on daily with what I am able to do. Keep focused on what you are able to do. If you have not ordered our FREE DVD “Coping with Chronic Neuropathy”, please do so from the website at the order DVD TAB.

      With caring regards,
      Col Gene

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