Idiopathic Neuropathy: Q&A

Sometimes peripheral neuropathy seems to happen for no particular reason. Doctors call this disorder “idiopathic,” which means “of unknown cause.”

Q&A with Norman Latov, MD, PhD

On February 22, 2023, the Foundation for Peripheral Neuropathy (FPN) welcomed Norman Latov, MD, PhD, from Weill Cornell Medical College, to present on idiopathic neuropathy (IPN). During this 60-minute recorded webinar, Dr. Latov provided an overview of IPN, including its definition and diagnosis. Following the session, Lindsay Colbert, Executive Director of FPN, sat down with Dr. Latov to ask some questions that were not answered during the program.

Q: Can you please provide more information on the specialized centers that were mentioned for nerve and tissue biopsies?

A: Most of the large academic institutions that have neuromuscular centers are certified in nerve and muscle pathology. These include the Mayo Clinic, Cleveland Clinic, Johns Hopkins, Columbia U, Washington University at St Louis, Duke University, Emory University, Louisiana State University, University of California at San Francisco, San Diego, or Los Angeles, University of Colorado, University of Rochester, University of Texas in Houston or Dallas, University of Kansas, Mt Sinai Hospital in NY, Stanford University, University of Pennsylvania, University of Virginia, University of Pittsburgh, University of Alabama, University of Arkansas, and University of Michigan, among others. You can call the centers directly to find out.

Q: During the program, you mentioned that physical exercise (walking, biking, etc.) might make idiopathic neuropathic numbness/weakness worse post insult? We’ve always been told that exercise was important for nerve health as long as it’s done within reason and under physician guidance.

A: Physical exercise is important for maintaining good health, endurance, and to strengthen weak muscles. Excessive or too vigorous exercise that cause increase weakness should be avoided.

 Q: Is it true that anyone with neuropathy should drink NO alcohol? That even light drinking (3-4 drinks per week) should be avoided as it is always toxic to nerves, especially when one already has neuropathy?

A: Alcohol is a neurotoxin. Try gin with tonic and a slice of lime, and leave out the gin. Tastes almost the same.

Q: Can statins cause PN?

A: Statins can rarely cause neuropathy, myopathy or hepatitis. If there is a question, you can ask your doctor whether you can discontinue it for about a month, to see if the neuropathy improves.

Q: Is there a place to find an exhaustive list of all things to test for as known or suspected causes of PN? We often see categories, but would like an exhaustive list.

A: There is a listing of tests in my book “Explaining Neuropathy…” Pg 75-77. My book is available for purchase here.

Q: Can small fiber neuropathy (SFN) progress to large fiber neuropathy? And if so, what is the likelihood?

A: SFN can progress to large fiber neuropathy in 10-20% of cases. That can be checked for by repeat examination.

Q: What are your thoughts on spinal cord stimulator implants for pain management?

A: These can be effective is some cases. It’s worth trying if non-surgical interventions don’t work.

Q: In Europe, alpha lipoic acid (ALA) is often the first line of treatment for PN. What are your thoughts on ALA?

A: It’s considered an alternative treatment. There is weak evidence that it can help pain in diabetic neuropathy, but the studies aren’t very good. There is no evidence that it helps nerve regeneration. But there are few or no side effects, so there isn’t a downside to trying it.

Q: How do I go about getting off-label treatments for PN? Is this recommended?

A: By definition, if it’s off label, it’s not medically proven, and therefore, cannot be medically recommended.

Q: When would IVIG or other more aggressive therapies be indicated for a patient suffering from neuropathy?

A: These are only recommended for specific causes, such as chronic inflammatory demyelinating polyneuropathy (CIDP), but not for other types of neuropathy in which their benefit is unproven.

Q: What drugs and treatments are “on the horizon” for treating IPN?

A: There are a number of companies working on medications for neuropathic pain, but none proven. Nothing as yet for nerve regeneration.

Q: What are the chances that my idiopathic neuropathy is misdiagnosed? Isn’t there always a cause of a disease? When should I accept that it’s idiopathic?

A: If there is any question, you can always seek a second opinion at a neuromuscular center.

Dr. Latov, thank you so very much for your time and expertise. FPN is extremely grateful for the support you are helping to provide to patients affected by idiopathic neuropathy.

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