What are the critical needs in Intravenous Gamma Globulin (IVIg) research and clinical training for these neuropathies?
By LtCol Eugene B Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange in Vietnam.
Research is CRITICALLY needed for a broadly accepted standard for diagnosis of each of the neuropathies!
Research is CRITCIALLY needed for determining the proper dosage, the proper infusion rate, the frequency of the infusion, and fluid volume issues for patients with these neuropathies. The recent Journal of the Peripheral Nervous System, published by the Peripheral Nerve Society has recently published articles in this regard. See Volume 19, No. 3, September 2014. (There is a charge for looking at this article). Recent textbooks (2012) on Peripheral Neuropathy do not appear to address this important subject.
Proper clinical training for neurologists and other medical disciplines is a critical need based on the research and current knowledge available. The lack of clinical training in medical schools, in the testing for the cause and approaches to treatment of neuropathy is the basis for many of the frequent failures to treat and diagnose many neuropathy patients and the failure in the proper administration of IVIg!
My question is how do you get the information that is published in the Journal of the Peripheral Nervous System out to the clinicians? Hopefully, we can work with others to participate in the annual conferences of neurology and related disciplines to provide updates on this information regarding the diagnosis and treatment of the neuropathies.
Finally, Doctors and not insurance companies, Pharmacists, or Hospital Administrators must be put back in charge of the medical treatment decisions for the neuropathy patient. Currently in 2015 the doctors are spending much time as ‘secretaries’ meeting the increasing over burdening bureaucratic details in reporting systems to Medicare and other insurance companies. Today, doctors not only must mention the date of an injury or medical event but must be specific as to the day of the week even with the date! When do the medical lawyers stop and the doctors regain their rightful place in the medical system?
NOTE: Copyright 2010-16 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: gene@neuropathysupportnetwork.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
RELATED ARTICLES:
Article #1:
Facts About Intravenous Gamma Globulin (IVIg)
Article #2:
My Neuropathy symptoms prior to receiving Intravenous Gamma Globulin
Article #3:
Why I started Intravenous Gamma Globulin (IVIg) and how it happen
Article #4:
My first experience with Intravenous Gamma Globulin (IVIg) (IVIg) in April 2004?
Article #5:
How Intravenous Gamma Globulin (IVIg) Affected My Long Term Neuropathy Symptoms
Article #6:
Surgery while on Intravenous Gamma Globulin (IVIg) with CIDP
Article #7:
What Happened When My Intravenous Gamma Globulin infusion (IVIg) Was Delayed
Article #8:
What Happened When My Intravenous Gamma Globulin (IVIg) Dosage Was Reduced
Article #9:
How Intravenous Gamma Globulin (IVIg) Infusions Has Affected My Life
Article #10:
What Doctors May Consider in Writing the Script for Intravenous Gamma Globulin (IVIg)
Article #11:
Getting Help Accessing Intravenous Gamma Globulin (IVIg) and with Insurance and Product Brand Questions
Article #12:
Critical Needs in Intravenous Gamma Globulin (IVIg) Neuropathy Research and Training
Thank you so much for this very informative article on IVIG. My wife has been diagnosed with CIDP and we have just begun the trip down this long and difficult road. We are unsure how this debilatating disease started but suspect her Celiac disease triggered it. Needless to say, dealing with these issues was not how we intended to spend our retirement years. I look forward to additional information on how to care for my wife and treatment options that may allow us to recover some sembilance of our previous life.
Thanks again,
Rick
Rick: You are welcome. Dr. Latov notes that Celiac diseae is a known cause of neuropathy. Is your wife able to treat the celiac disease so that it is not the problem that it was before?
I was thinking out loud that if the celiac disease is under control, why does the neuropathy not resolve? Makes me wonder if something else may be going on…
The celiac disease is controlled by a life long gluten free diet. The last blood test ~3 months ago was negative for gluten. The CIDP was diagnosed by our neurologist. Both the neuro and the gastroentrologist do not believe the celiac and the CIDP is related. Additionally my wife suffers from Aeid’s pupil which is caused nerve damage to the ganglion nerve behind the eye. The neuro opthamologist said no relation to the CIDP or Celiac. It just seems to coincidental that all of these started at relatively the same time (within 6 months of each other). Both celiac and CIDP are autoimmune disorders where body attacks itself. The celiac attacks the villi of the small intestine and the CIDP attacks the peripherial nerves. We are scheduled to see a CIDP specialist in August. Hopefully we will get some answers. In the mean time I am going to request our neuro order additional IVIG in hope it will help resolve the pain and weakness in her legs and feet and the speech inpediment that has appeared. Thanks again for your knowledge and support.
Rick
Rick: As you stated celliac disease is a cause of neuropathy and CIDP is a form of neuropathy where the immune system attacks the peripheral nerves, so I actually have no idea what the neuro and gastro are talking about. I am going to e mail you links for optic neuropathy for you and your wife. IVIg would seem to be the appropriate treatment but Dr. Latov’s book does mention some other treatments that have been effective. Thinking of you and wife! With caring regards.
Thanks so much for your time and your willingness to share information. Oh, by the way, I ordered Dr. Latov’s book last night.
Thanks again,
Rick