Idiopathic Small Fiber Neuropathy Research

Try Xanax beefier bed. The next day is usually good. Also, watch your diet...No Meat!

Hopefully, this thread will attract some comments from clinicians researching neuropathy. Research is being done but no new treatments have emerged in years! Why?

Hi @magnum52, Mayo Clinic Connect is a social network connecting patients. I can understand your desire for research into a condition for which there are few answers.

Here is a sample of research studies in SFN https://www.clinicaltrials.gov/ct2/results?cond=Small+Fiber+Neuropathy&term=&cntry=&state=&city=&dist=

At Mayo Clinic and elsewhere peripheral nerve regeneration and repair is also a focus area of regenerative medicine: https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration

You might also be interested in these related discussions:
- Contributing to Neuropathy research - Stuff That Works: https://connect.mayoclinic.org/discussion/getting-involved-in-hopes-of-finding-help/
- Scientific research and scholarly papers on Small Fiber Neuropathy https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/

Another good site for locating clinical trials is CenterWatch - https://www.centerwatch.com/clinical-trials/listings/search/?q=Small+fiber+neuropathy

I worked for a major pharmaceutical company for over 30 years. Clinical trials obviously are necessary, but at some point they should result in some type of better treatment for the conditions being studied. There have been countless clinical trials researching neuropathy, but absolutely nothing in terms of a product has materialized! What’s going on? The drugs currently used to treat neuropathy are only somewhat effective, at best. There are large numbers of drugs to treat MS, depression, and many other neurological problems. For neuropathy you have the anti-seizure drugs and SNRI’s and a few other barely effective agents, but nothing that’s even close to a breakthrough. I find it odd that over this many years we are still spinning the R&D wheels when it comes to neuropathy.

First, I was diagnosed with idiopathic small fiber neuropathy before I went to Mayo in Rochester. I went there with only one goal in mind and that was to confirm my diagnosis. They confirmed my diagnosis but could offer nothing new to try, because there IS nothing new to offer. To put it simply, all any Neurologist or facility can offer is the same old worn out cadre of drugs. I just posted tonight my comment on neuropathy research. I was pleased with what they did do in terms of testing, but here is just so much they could do.

Good evening @magnum52. I share your concerns. And I have noted that even Gabapentin which everyone seems to try at one time or another was not developed for neuropathy......just borrowed from another condition. My hope is that as more and more of us are living longer.......then there may be more attention on a condition that affects so many of us. Thanks for adding your encouraging words
Chris

Agreed. It's been nothing but frustrating to witness developments with so many other conditions, while leaving SFN in the dark ages. I've been battling this disease since 2007 and haven't gotten anywhere, as far as treatment. (I won't even mention the word "cure"!) Maybe if we keep speaking up, keep searching for answers, and keep saying we want more than what is being offered, we might get somewhere.

Has everyone been on the This Stuff Works site and contributed? They might be able to help our efforts if enough of us get involved.

I’m going to look at the site @runnergirl. I too think we must speak up. I am less frustrated though about this whole thing since I’ve joined this Mayo forum. I no longer blame my personal neurologist for the diagnostic, research, and cure-finding that the whole discipline of Neurology has chosen not to further. I do, however, find him not capable of communicating, not helping to understand the situation, not making non-drug related suggestions to help sustain or improve quality of life as bad as it’s become, and just not showing compassion at least for what we’re going through and how we’re trying to stay positive and want guidance on how to make the best of it (not depression pills). For that, I have asked my PCP for a new neurologist referral. She previously kept talking me out of it because she’s not sure the grass will be greener, but I need my medical team to make me feel positive.
Last week I asked my Neuro for a Podiatrist referral to help fit me with orthotics or shoes to help me walk better and more properly, as to help reduce the leg, back, and hip pain I get from not doing so. In the exam, with a trainee in the room, he pointed to HER and told her to look at how I’m developing hammer toes. Would you believe I left my 6 month visit with him without a Podiatrist referral?? My PCP made the referral for me when I saw her for my physical yesterday, and I already have a Podiatrist appointment for next week!! I so want to get my gait improved and am rejoicing at this opportunity!
Now the sad part. My PCP and I agreed it would be ideal to keep a Neurologist in our same medical system, as I have about 7 other doctors and lab centers in the system and it would be convenient to have all records in the same system to share. Apparently it takes a Supreme Court trial and a lot of paperwork to justify why I want to change to a different Neurologist in the same system, especially one 15 miles further away from me….. So, if my reasons for needing better teamwork, not feeling we understand each other, and feeling I need better organizational and communication from my Neurologist aren’t good enough, I may not be granted a new Neurologist. I would then have to transfer my Neurological care to a different healthcare system, which would certainly be ok, but I would be terribly disappointed with this major major healthcare system I use. It’s not like I’m leaving my hairdresser for the one who has the chair directly beside him/her - we did pick one in a different office. But, oh well…

@dbeshears1 I'm sorry to hear you're not getting the help or compassion you deserve. If you want to switch neurologists, go with what you want to do. It's your body, your condition, and you have to be your own advocate. I've seen at least somewhere between 10 and 13 neurologists over the past 15 years of dealing with my condition. I wasn't going to stop until I found someone who not only knew what he (or she) was doing, but was also a decent communicator and also compassionate. It took me 13 years to find this person. He is not in my hometown, so I need to either meet via video conferencing or traveling to his office, but it's been worth it.

I did find that all of the others just didn't have the experience with this condition, or, as we all know, there's just not enough research. Here's a link to the Stuff That Works site: https://www.stuffthatworks.health/ We all need to speak up about what we need to help make our lives better.