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Idiopathic Small Fiber Neuropathy Research

Neuropathy | Last Active: Jun 19 12:24pm | Replies (135)
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@stress

I’ve had SFN, i.e. PN in my feet for ~2.5 years. FWIW, I’ve been taking Oxycodone and Methadone for severe pain. It was very effective for the first 2 years, now somewhat so and for a shorter period of time. This followed attempts with Lyrica and other SFN specific drugs, without any pain relief.

I have accumulated a number of esoteric research articles while looking for etiology and/or effective treatment. The bottom line for causation for me links the possibility of Statins and / or heavy alcohol use. I use Statins for CAD and will ask the cardiologist. I also drank a lot during college but quit over 40 years ago??? I’m wondering if ceasing the statins would help? Does anyone else link either of these possible causes; and how adjusting for them might be helpful?

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Replies to "I’ve had SFN, i.e. PN in my feet for ~2.5 years. FWIW, I’ve been taking Oxycodone..."
Stretch | @stress | Apr 1, 2022

I don’t know if anyone has referenced this small “owner’s manual” for SFN; it’s available at Amazon and online download, ebook at hiltonbooks.com:
Small Nerves, Big Problems: A Comprehensive Patient Guide to Small Fiber Neuropathy Paperback –
by MD Todd Levine , et al Neurologists
Amazon’s preview:
Small Nerves, Big Problems is the only comprehensive resource available for patients with small fiber neuropathy. Written by eight leading neurologists on this disease, the content provides patients and caregivers with the latest information available today about small fiber neuropathy: what causes it, what the common signs and symptoms are, how it’s diagnosed, and ways to manage daily life and minimize pain. Small fiber neuropathy is increasingly being recognized as a major cause of painful burning sensations in those suffering from diabetes. Small Nerves, Big Problems provides accessible, necessary information to better understand and cope with this disease.

* Publisher ‏ : ‎ Hilton Publishing; 1st edition (January 1, 2017)
* Language ‏ : ‎ English
* Paperback ‏ : ‎ 100 pages
* ISBN-10 ‏ : ‎ 0998328200
* ISBN-13 ‏ : ‎ 978-0998328201

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joannemm34293 | @joannemm30809 | Apr 4, 2022

I have all these symptoms and many other neurological type symptoms for almost three years now and many specialists have no idea what to do and most all try to blame it on anxiety BUT I know it is NOT anxiety causing all these daily and relentless Neuro type symptoms.
I've finally pushed my Neuro Dr to refer me out to another neuro doctor in Tampa FL to finally do a SFN biopsy since my neuro Dr does not do them.

Either my symptoms are from a virus I caught in Nov 2019 which I believe was Covid OR maybe it's from this LOOP recorder planted in my left chest area OR could it be due to the Metaprolol heart meds I've been taking for 30 years now??

All these specialists I've seen, millions of dollars in testing of all kinds YET no real answers.

I was on a one year wait list to see a Mayo Dr of Neurology in Jacksonville FL. Dr Cheshire (even though many patients like me who have already seen this Dr gave him poor reviews) the day before I was supposed to make the seven hour drive to Mayo I became sick and tested positive for COVID (again) so I had to cancel my long awaited appointment.

It does concern me though that the Mayo Neurologist in FL has gotten so many poor reviews by many patients who are suffering like I am yet they went to Mayo to see Dr Cheshire and they were not happy with his attitude and comments made at them.

I'm soooo fed up with so many doctors blaming these debilitating symptoms on ANXIETY and quickly prescribing these darn antidepressants.

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Nazir Khan | @nukhan | Apr 5, 2022

In reply to @stress I am sorry to hear about your situation. I am also suffering from SFN for the last 5 years. and am currently experiencing rapid progression on a daily basis. Although I never drank in my life I suspect statin and antibiotic ciprofloxacin to be the culprit in my case. Although I have not been using either of them from the day I was told that these may be the causation it didn't improve my conditions. In fact I am experiencing deterioration on a daily basis.

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