Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@retired123

I have had NO help from the "professionals". All of them dismiss my concerns. The most help was from a podiatrist and a vein specialist tried his best. "One size fits all" comments. This chatroom and online researching plus trial and error is where I get help. My advice is to stay away from all sugars, take nerve support supplements, good nutrition and be as active as you can. ALWAYS keep a positive outlook and continue to educate yourself on SFN. Your body and brain listen to you. I know it is difficult when your life is now different.

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So is stopping all sugar an indication that the SFN is caused by diabetes? or developing diabetes?

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@mcvmark

Does stem cell work? Doesn't sound like it does yet?

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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?

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@rivermaya34

@jinxedroot93 I see Dr. Robert Carlile in Summerville, SC (near Charleston) and I wouldn't change to anybody else in the world! He is the most in depth and thorough than anyone else I've been to, and he was the one who finally got answers to my problems and a path to managing them! He really, really cares about people and his bedside manner is calm and warm. Even though he does not suffer from nerve pain, he deeply cares and will spend the time with you to answer any questions and keep things cost-effective. Good luck!

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Thank you I'll check and see if he is taking new patients

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@mcvmark

Does stem cell work? Doesn't sound like it does yet?

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@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/

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@jinxedroot93

I was diagnosed with idiopathic SFN 3 years ago, and since then I have realized I've had symptoms since as early as 12 years old. I've been able to manage things pretty well until recently. About 2 months ago it seems my symptoms have gotten worse, and I now can not tell how much pressure I'm putting on a gas or break petal. I explained this to my neurologist at MUSC and was given a blanket statement and told to see a phycologist because its not SFN. I then questioned the Dr. why they would tell me three years ago that what I was describing was a symptom but now its not, and I was brushed off and told not to drive until something can be figured out. They offered an in person appointment in January but I'm not sure if I should continue with that Dr. Has anyone experienced numbness to the point of not being able to drive? Also does anyone have any suggestions for Neurologist's in S.C.? Thanks in advance

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@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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Ouch! 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?

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@total99

Went to top neuropathy doctor at Duke and had EMG. She said "Yes you have small fiber neuropathy. Bye,Bye. I don 't treat that. Find a rheumatologist to help you."

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There are quite a few doctors like that. My first neurologist wouldn’t treat it as well. I go to a neurologist who specializes in sfn. I have autonomic small fiber neuropathy so I needed someone who deals with this on a daily basis.

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@total99

Ouch! 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?

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I liked Dr Karissa Gable at Duke for Neurology. I was never diagnosed with SFN, but I imagine she treats it, I am thinking that visiting a rheumatologist might be a good next step for me, but I’m in the Charlotte area of NC now so would prefer not to travel to Duke for one.

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@total99

So is stopping all sugar an indication that the SFN is caused by diabetes? or developing diabetes?

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Since diabetes is a leading cause of neuropathy and you don't your cause just yet, I think it is a good precaution while you search for the cause. My routine lab work shows I do not have diabetes but that is based on glucose level standards. "One size fits all" thinking. Perhaps I have a glucose tolerance issue that does not respond to the blood test and requires a different test to reveal itself. I don't know but I have an appointment with an endocrinologist to pursue this. Another common cause can be thyroid disease. I don't know my cause but I'm looking into the most common ones first. Just my way of thinking. Can't hurt!

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@dbeshears1

@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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Thank you. I have been considering duke because I live in the Columbia area so it's about the same drive time wise as MUSC. I get losing your income over SFN. I was a licensed cosmetologist but had to stop and drop my license because I started having spasms and would throw equipment at myself or across the room. That was 2 years ago. Now every job I get I struggle bust for a few months then end up with worse symptoms and end up losing my job at some point. It's been a vicious cycle but my fiance and I are going to start a 3d printing company early next year so fingers crossed it will work out for us.

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