Considering Mayo for Small Fiber Neuropathy and Other Issues

Posted by rwinney @rwinney, Apr 28, 2019

Hello. I’m wondering if Mayo has made advancements in the treatment of small fiber neuropathy? Testing only proves a B12 deficiency which has been handled but makes no difference. Nor does the Hydrocodone, Lyrica, Cymbalta, creams , PT, acupuncture, etc…. Chronic pain has run its course and I no longer want it! Feeling hopeless, however…. I feel that if I don’t visit Mayo, I will not have tried EVERYTHING. Also, suffer from chronic migraine, herianted and bulging cervical discs and corneal eye disease. I owe it to myself and my young family.

Hi @rwinney, welcome to Mayo Clinic Connect. I see that you have also posted about SFN in the Neuropathy group on Connect: https://connect.mayoclinic.org/group/neuropathy/ You will get great advice and support from @johnbishop @artscaping and others there. I also encourage you to follow and post to other groups related to the issues you list in your message:
– Chronic Pain https://connect.mayoclinic.org/group/pain/
– Eye Conditions https://connect.mayoclinic.org/group/eye-conditions/
– Spine Health https://connect.mayoclinic.org/group/spine-health

As you've no doubt heard, Mayo Clinic treats the whole person and many people seek an appointment for that very reason. With the issues that you list it may be difficult to know where to start. If you call the Mayo Clinic campus of your choice, they can help answer your questions and guide you through where to start, self-referral vs. physician referral etc. You'll find the numbers to call on this webpage: http://mayocl.in/1mtmR63

Answers to some commonly asked questions from people considering Mayo Clinic can be found here: https://www.mayoclinic.org/patient-visitor-guide

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Hello @rwinney, I would like to add my welcome to Connect along with @colleenyoung and other members. I have idiopathic small fiber peripheral neuropathy but do not have the chronic pain that goes with it. I only have the numbness which started about 20+ years ago and I waited until 2016 to get a diagnosis. You can read my PN story in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

It's great to hear you are being pro-active and advocating for your health. One of the best things you can do is learn as much as you can about your health condition and available treatments. Each of us are different and what works for some of us will not always work for others. I'm hoping you find some answers soon. Colleen has listed some great discussion groups where other members with some of your symptoms share their experiences with treatments. Here are two additional links that may provide alternative treatments for chronic pain associated with neuropathy.

Breaking Away From Pain With the Help of ‘The Scrambler’
https://sharing.mayoclinic.org/2015/02/19/breaking-away-from-the-pain-with-the-help-of-the-scrambler/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Has your neurologist made any suggestions for alternative treatments or therapy? If you are looking for a second opinion, Mayo Clinic is a great option.

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Hello @rwinney, I am a Concierge at Mayo. If you do decide to come to Mayo, my colleagues and I would be happy to assist you with finding lodging and transportation. Please don't hesitate to reach out to us: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services.
– Janna

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@rwinney Good morning and thanks for joining our community. You will find a supportive group that shares lots of options for coping with small fiber neuropathy (SFN). As you already know, there is no cure for neuropathy. There are some clinical trials and research being done but it will be a while before more definitive results help us with authentic options for treatment. I too was not accepted at Mayo even with a local referral from my Primary Care Provider (PCP). Their response to both of my requests was genuine. When they received my diagnoses of Chronic Myofascial Pain Syndrome with Small Fiber Neuropathy and reviewed the efforts being made to control the pain and discomfort, they told me that at this time there was nothing that they could add that would be beneficial.

If you are interested, I have now been searching for and testing my own treatment plan with the help of my providers. We are partners and work together to give me the best quality of life possible using an integrated medication approach that includes medical cannabis. Supportive activities that I find helpful include daily yoga and meditation, and weekly, an MFR massage that @johnbishop mentioned in his response. Because of MFR, I am now able to add short daily walks to my routine again after 2 years of limited walking. I am happy to share options with you. Can you tell me more about what your day is like and what you do to combat the pain, and the anxiety about the pain? I wish for you to be free of suffering. Chris

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