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Small Fiber Neuropathy: What helps?
I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.
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What can I do about my foot nueropathy..im.not diabetic?
Does stem cell work? Doesn't sound like it does yet?
Wow, please tell me the name of that MUSC neurologist so that I do not see him or her. I am looking for a neurologist at MUSC to treat newly diagnosed(at Duke Med) small fiber neuropathy!
Do you go to a physical therapist for foot massage? Or to a regular message person?
So is stopping all sugar an indication that the SFN is caused by diabetes? or developing diabetes?
Welcome @mcvmark, Sorry to hear you've joined the neuropathy club. It sounds like you just have pain and tingling in your feet and it's not related to diabetes. Other than seizure type medications prescribed for neuropathy by your neurologist or doctor, there are many different treatments members have found helpful for treating their symptoms. You can read some of the experiences members have share in the Member Neuropathy Journey Stories: What's Yours? discussion here -- https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.
Are you able to share a little more about your diagnosis and any treatments you have tried?
Thank you I'll check and see if he is taking new patients
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1 Reaction@mcvmark - There's no clinical evidence that stem cell therapy for neuropathy works that I have seen. There is a discussion here that you might want to read through.
Stem Cell Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/
Although I think stem cell therapy is a great hope for all of us with neuropathy, I don't see it happening in my lifetime.
Here's some information that I posted in that discussion awhile back.
‘Amazing’ New Stem Cell Treatment for Neuropathy (July 2015)
— https://www.painnewsnetwork.org/stories/2015/7/12/amazing-stem-cell-treatment-for-neuropathy
National Institutes of Health – Mesenchymal stem cells to treat diabetic neuropathy: a long and strenuous way from bench to the clinic
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979500/
@jinxedroot93 i too sometimes feel insecure with the feeling I have with gas pedal and brake, and do exercises and stretching, and don’t drive in the dark so I have the ability to glance down at my feet. I had undiagnosed neuropathy that started 5 yrs ago at age 51. I lived in SC near Myrtle. Seems for every nit picking thing I was referred to MUSC. For the 3 different medical issues, One being neuropathy, I got ZERO results from them. It cost us a lot of $$$, time, and travel, a lot for a 51 yr old who now lost annual income to boot with this sudden disability. We decided to leave SC and move inland to the state of NC where I could have comprehensive medical care in my backyard vs having to travel for it. In doing so and transferring medical records to new home, and at the start of the Covid pandemic, I discovered a CT scan report from MUSC that was almost a year old and mentioned an abnormal growth in my neck. They never told me or my family, my admitting doc there, nor my PCP!! I got on it right away, trying to line up Dr’s in NC, and yes, of course it was cancer. Anyway, because of my personal experience, I have a hard time recommending MUSC for anything out of the ordinary, routine medical needs. Run, walk, or wheel yourself to better help. I did find Duke much more involved with neuropathy, but from SC, that too was a hard and expensive relationship if they only wanted to “watch” me and check in with me every 6 months vs having an action plan to try to diagnose. Good luck and safe driving!
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2 ReactionsOuch! I went to Duke neurology for assessment of my neuropathy. "yes, you have small fiber neuropathy, go find a rheumatologist." Can you suggest a neurologist and/or rheumatologist at Duke that treat small fiber neuropathy?