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Treatment options that have worked for Small Fiber Neuropathy
Neuropathy | Last Active: Apr 20 2:04pm | Replies (106)Comment receiving replies
Before I begin, full disclosure. I am a retired physician (Board Certified Emergency Medicine) and a patient (idiopathic small fiber PN; coincidently, I even suffer from lymphoma, much like the poster above. However, none of my many doctors link it to the PN). As a patient, I have been subject to many of the same frustrations expressed here (difficult disease, unsatisfactory treatment, etc.). I have "fired" one of my neurologists because of a clash of personalities, not his lack of knowledge. I have also experienced the issue noted above about neurologists being frustrated with PN, and thus gravitating towards patients with diseases they can treat more successfully. For that reason, it would be optimal to find a neurologist who specializes in neuromuscular diseases. That can be hard to do in the medical system we have in this country. A general neurologist would be second best.
This forum shouldn't become a debate between individuals trying to prove their point. Therefore, I will not debate the 2 posters who disagree with me point by point, except to say that the linked article by Suzy Cohen is filled with so much misinformation and unscientific opinions that it would take a short essay to refute it. This is not surprising, nor unusual. Suzy Cohen is a pharmacist by training, not a physician. By her own admission, she "specializes" in thyroid problems, not neurology or PN, although how she specializes in any particular medical field as a pharmacist is unclear to me.
Moreover, she is also an author of "medical" books which are sold to the general public for a profit. She also sells her own line of unproven supplements to the public, again at a profit. She is a media personality. All of this is listed by the Foundational For Peripheral Neuropathy as warning signs to patients to be careful about when choosing to accept advice or purchase supplements or devices.
For the non medical reader interested in learning about the science of PN, it's diagnosis, treatment, alternative treatments, etc., I recommend the short book "Peripheral Neuropathy: What It Is and What You Can Do To Feel Better" By Janice F. Wiesman, MD. The book was published in 2016, so it is not completely up to date, but it is still very relevant and accurate. Dr. Wiesman was a board certified neurologist and specialist in neuromuscular diseases, which includes PN. Unfortunately she passed away in 2020.
If I were a practicing neurologist, I would give this book away free to all my PN patients.
Replies to "Before I begin, full disclosure. I am a retired physician (Board Certified Emergency Medicine) and a..."
Good post, Dr. Rapp! There is an awful lot of medical nonsense available online--and even in print.
Dr. Norman Latov (Director of the Peripheral Neuropathy Center at Weill-Cornell School of Medicine in NYC) has written two other good books on PN, as has Mims Cushing. (All--and others, some not so medically authoritative--are affordably available at thriftbooks.com.)
I’m so glad you posted this. I am a retired RN, and I read the Suzy Cohen article. I was surprised that I had never heard of her (first red flag). Reading with an open mind, I appreciated the diagrams and simple explanations. But when I got to the paragraphs about small fiber nerves regenerating, I did a double take. She was so cheerful and certain! Well, of course this is true - when I cut my finger, or have surgery, the nerves are injured, and thankfully, they do regenerate. But to imply that my painful, debilitating, life-changing idiopathic length-dependent small fiber polyneuropathy can be cured - just like that - is an example of “blaming the victim “. As in, if I just did the right thing, according to Ms Cohen, I would be back to normal. This, in spite of loads of research studies and clinical examples of the exact opposite. That in fact, my length-dependent SFN is progressing, as expected, and just recently confirmed by one of my neurologists who is at UAB, an excellent medical research institution.
My favorite form of “blaming the victim” is the diet and nutrition shamers. Really? Too many Little Debbie cakes, and a week with more carbs than vegetables damaged all my nerves? At some point during the past eight years of pain, when my diagnosis was just fibromyalgia, my chiropractor referred me to a colleague who ran a nutrition-based clinic outside Atlanta, the Goldberg Clinic. I won’t go into the whole humiliating and horrible experience, but I paid thousands of dollars, endured ridicule and shaming, and starvation to the point that I was near fainting for weeks. This just shows that desperate people will take desperate measures.
Whew. What a rant. But don’t let anyone tell you that you can heal yourself of advanced peripheral neuropathy.
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What Garito says in this context is absolutely correct:
While neurologists learn about PN in their first year, they are frustrated because it has no cures or even treatments other than symptomatic treatment (which is not very effective in all or even most cases. So they go on to concentrate on epilepsy and many other neuropathies that are more well-studied and "interesting." and that have proven treatments or even cures. Finding a neurologist who really knows and cares about PN is very difficult.